Lymphedema Treatment Act Newsletter Archives

Don’t forget to subscribe to our newsletter if you haven’t already!

 

July 17, 2017: Watch Rep Reichert’s statement on the LTA

During a recent Ways and Means Committee hearing, our House sponsor, Rep Dave Reichert, made an impassioned speech about the importance of the Lymphedema Treatment Act!

 
This was a Medicare-related hearing, so he specifically references how the LTA will help seniors with lymphedema. However, since Medicare sets the standard for all other insurance plans, passage of the LTA will benefit all patients.

What follows is the actual correspondence our board received from Rep Reichert’s Legislative Director:

“Today, during the Ways and Means Committee markup, Congressman Reichert raised the Lymphedema Treatment Act, and his remarks were echoed by Rep. Blumenauer. We were so thrilled to have been joined by Rep. Blumenauer in our remarks and have bipartisan comments in the record supporting the LTA. It was a great moment to have the Chairman publicly hear from both members and it adds to the record we’ve created, beginning with the Congressman’s questions to previous HHS Secretaries and his testimony on the LTA before the Health Subcommittee last congress.

Every day we move forward and make progress on gaining relief for lymphedema patients! I’m so thrilled with how far we’ve come since we first started working together and how many leaps and bounds we’ve made this year in just the first 5 months of the new congress. Already we’ve surpassed our cosponsor total from all of last congress! We wouldn’t be where we are without your advocacy, thank you for all your hard work. Together, we’re going to get this done.”

This week, myself and three other members of our board will be on Capitol Hill meeting with offices. We frequently listen to staff take constituent calls while in offices, and would love for them to get a call about the LTA while we’re there!

Please take a couple of minutes to call your members of Congress who are not yet cosponsoring the LTA (again if you already have) and ask them to cosponsor this bill. You’ll find the phone number and a brief call script at the links below.

Thank you for your advocacy and let’s get those phones ringing for the LTA!

 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
July 12, 2017: History of the Lymphedema Treatment Act
 
This newsletter contains a number of pictures and can best be viewed on this page of our website.
 
 
 
June 28,2017: We have Advocacy Teams in all 50 States! Not yet a Member? Join your team today!
 
We have grassroots advocacy teams in all 50 states! If you haven’t joined your state’s team yet here are a few reasons why we hope you will consider it.

  • No prior advocacy experience is needed.
  • The time commitment is entirely up to you.
  • It won’t cost you a thing and you can do everything needed to increase support for the LTA right from home.
  • If your Representative and Senators are not yet cosponsors, you will receive additional support to get them signed on.
  • If your Representative and Senators are already cosponsors, you can assist others in reaching that goal.
  • The more people that get involved the sooner lymphedema patients will have coverage for their vital compression supplies!
Additional information and a link to join your team can be found on the State Teams page of our website.
 
After joining you will be introduced to the other members of your team via email. If you have any questions please respond to this message. 

As of today we have 242 House cosponsors and 28 Senate Cosponsors. Join your team and help us get the Lymphedema Treatment Act passed this year!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
June 21, 2017: We will help you schedule a meeting with your members of Congress at their nearest district office!

You can increase support for the Lymphedema Treatment Act by meeting with your members of Congress at a nearby district office, and we will help you schedule the meeting!

In-person meetings are the single most effective way to persuade your members of Congress to cosponsor the bill, and it’s easier than you think. Everything you need to schedule, prepare for, and execute a meeting with your Representative or Senators is on the District Meetings page of our website.

We are happy to get the ball rolling for you by placing the initial meeting request on your behalf. Once the office responds you would then work with them to find a day and time that suits your schedule.

If you would like this assistance simply respond to this email with your full name and address. Your address must be included because an office has to be able to verify you are a constituent.

Thank you for your advocacy – it makes all the difference!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
June 14, 2017: Increase Awareness – order our FREE info cards and more!
 
Help raise awareness about lymphedema and the Lymphedema Treatment Act!

Our FREE cards are available in two sizes. To order yours, and find links to other great printable educational materials, go to our Increasing Awareness page.

These materials are perfect for sharing with doctors, therapists, support groups, garment fitters and suppliers, friends, family and colleagues! Please ask them all to email their members of Congress in support of the LTA using the easy form on our website.

Thank you for your advocacy and support!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

June 10, 2017: Watch Senator Cantwell put in a plug for the LTA!

During a recent Senate Finance Committee hearing, Senator Cantwell made a point to mention the Lymphedema Treatment Act!

While she had to keep her statement brief, we appreciate that she took the opportunity to address leadership and raise awareness about the LTA amongst the very same committee members who have jurisdiction over our bill. You can watch the segment here.

In addition to our YouTube channel, you can keep up with the latest LTA news and happenings by following us on Twitter and on Facebook

You can also reach out to your members of Congress via social media. Sample tweets and posts are available on our website.

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
June 6, 2017: We’ve reached 220 cosponsors – that’s more than 50% of the House!
 
Thank you for helping us reach this milestone of support in the House! Check to see if your Rep is among our 220 House cosponsors. We also have an impressive 27 Senate cosponsors.

There is no “magic” number needed in order to pass the bill, but our goal is to reach a super majority in both the House and Senate. That means 60% or greater of all members in each chamber, which is 266 in the House and 60 in the Senate

Some offices need little more than to be asked. Others need a lot of education and persuasion from their constituents. Every email and phone call makes a difference!

 
Hearing from you makes a difference!
 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group

 

 

May 31, 2017: More Opportunities to Make Your Voice Heard for Lymphedema!

Congress is currently on recess, which means it is a great time to meet with your members at home to speak with them about the Lymphedema Treatment Act.  

 
You can watch our free Advocacy Training Webinars to prepare before you attend, and find additional tips, including materials to print and bring with you, on our website.

Make your voice heard for lymphedema!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
May 22, 2017: Our House bill just surpassed 200 cosponsors & we are on Capitol Hill again this week!

For the next three days, members of our board and our State Teamswill be on Capitol Hill meeting with offices about the LTA. You can increase the impact of our visit by calling your members of Congress this week.

Use the links that follow to see the phone numbers for your Rep and Senators, and our simple four sentence script. Calls really make a difference and it will only take a few minutes to leave a message for all three of your members of Congress!

 
It’s up to each and every one of us to educate our members of Congress and win their support for the LTA. Check our House and Senate cosponsor lists to see who is already supporting the bill. Please make your calls TODAY!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
May 16, 2017: You don’t have to go to DC to attend a meeting for the LTA!

You can increase support for the Lymphedema Treatment Act by meeting with your members of Congress at a nearby district office! 

In-person meetings are the single most effective way to persuade your members of Congress to cosponsor the bill, and it’s easier than you think. 

Everything you need to schedule, prepare for and execute a meeting with your Representative or Senators is on the District Meetings page of our website.

Let us know if you have questions or need assistance. Thank you for your advocacy – it makes all the difference!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
May 6, 2017: Over 500 Patient Stories were Just Delivered to the Senate!
 
Over the last few years we have collected over 500 patient and caregiver stories through our My Lymphedema Story campaign.
 
Thanks to the efforts of those who attended our Lymphedema Lobby Days, and the work of one dedicated member of our groupwho lives in DC, we have just completed hand-delivering every single one to the Senate! 
 
Next up will be a much larger task – doing the exact same thing in the House, where there are far more offices. If you’d like your story included and haven’t submitted it please do so through the 
My Lymphedema Story
 page of our website.
 
Our stories are powerful and persuasive, and by sharing your story you’ll be making a difference!
 
You can also support this project, and all of the work we do to raise awareness about lymphedema and improve insurance coverage through passage of the Lymphedema Treatment Act, by making a donation to our all-volunteer group.
 
Thank you for your advocacy!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
April 22, 2017:  We have Advocacy Teams in all 50 States! Not yet a Member? Join your team today!
 
We have grassroots advocacy teams in all 50 states! If you haven’t joined your state’s team yet here are a few reasons why we hope you will consider it.

  • No prior advocacy experience is needed.
  • The time commitment is entirely up to you.
  • It won’t cost you a thing and you can do everything needed to increase support for the LTA right from home.
  • If your Representative and Senators are not yet cosponsors, you will receive additional support to get them signed on.
  • If your Representative and Senators are already cosponsors, you can assist others in reaching that goal.
  • The more people that get involved the sooner lymphedema patients will have coverage for their vital compression supplies!
 
Additional information and a link to join your team can be found on the State Teams page of our website.
 
After joining you will be introduced to the other members of your team via email. If you have any questions please respond to this message.

Currently, we have 127 House cosponsors and 23 Senate cosponsors. We are off to a very strong start in this Congress, but still need much more support.  

Join your team and help us get the Lymphedema Treatment Act passed this year!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
March 4, 2017: Lobby Days Recap – 45 New Cosponsors and Counting!

Our 2017 Lymphedema Lobby Days were a tremendous success! The grand totals are:

  • 71 participants from 26 states, with ages ranging from 8 to 81 (see below photo)
  • 275 scheduled meetings with offices representing 45 states
  • Dropped off an LTA information packet to an additional 91 offices
  • 45 new cosponsors for the LTA and counting! 
 
If you couldn’t join us in DC you can still make a big impact at home. The House and Senate will be in recess for the next two weeks, so now is a great time to reach out! 

Check your Members’ websites and social media accounts to find information about Town Halls and other public events. Or better yet, contact your nearest district office and request a meeting. Everything you need to schedule, plan for, and conduct a local meeting is right here.

Our advocates at Lobby Days did an amazing job, but in many cases offices will need to hear from more constituents before signing on. It’s up to each and every one of us to educate our own members of Congress and get them on board as cosponsors. 

Your advocacy makes a difference and together we will pass the LTA! 

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
2017 Lobby Days group photo
 
 
March 27, 2017: Be part of our Virtual Hill Days by contacting Congress TODAY!
 
Today, over 70 patient advocates from around the country are on Capitol Hill for our 2017 Lymphedema Lobby Days. While you may not be in Washington, DC, you can still make your voice heard by calling your Members of Congress TODAY!

Use the links that follow to see the phone numbers and our simple, four sentence script. It will take less than 15 minutes to call your Rep and both Senators and really makes a difference. 

It’s up to each and every one of us to educate our Members of Congress about lymphedema and win their support for the LTA!
Please make your calls TODAY! 

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
 
March 15, 2017: Two New Webinars & Dozens of New Cosponsors!

In the last few weeks our bill has gained dozens of new cosponsors! Check to see if your members of Congress are included: House billSenate bill.
 
Remember, cosponsors do not carry over from one Congress to the next, so our goal is to regain all of our support from last year as quickly as possible, and then surpass that!
 
LTA Timeline

Now is a great time to request a meeting with your Rep and Senators for the district work weeks of April 10th-21st. 
You can find step-by-step instruction on how to schedule, prepare for, and execute a district meeting on our website.

We also have two new recorded Advocacy Training Webinars available: “ABC’s of Advocacy for 2017” and “Create Great Meetings for 2017.” The links to both can be found on our website.

Thank you for your advocacy!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
March 8, 2017: Submit Your Patient or Caregiver Perspective to be Delivered to Congress at our Lobby Days!
 
Even if you are unable to join fellow lymphedema patients and caregivers from around the country at our Lymphedema Lobby Days, March 26th-28th, you can still ensure that Members of Congress hear directly from you!
You can submit your personal perspective to be hand-delivered to your Representative and Senators during our meetings. This is an opportunity to share how lymphedema has impacted you, and ask for your Members’ support!

Submissions must be received by March 15th, one week from today, in order to be included during this year’s Lobby Days. If they are received after that date they will be saved for future use. Tips on what to include can be found on our website.

Please go to our My Lymphedema Story page to submit your personal perspective
Our stories are powerful and persuasive, and by sharing yours you’ll be making a difference!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
March 3, 2017: Our Senate Bill Was Just Reintroduced – Contact Your Senators Now!
 
The Lymphedema Treatment Act has been reintroduced in the Senate!
 
Lead sponsor Senator Cantwell and co-lead Senator Grassley were joined by nine other bipartisan members of the Senate to reintroduce this year’s bill!  Read their remarkable press release here.  
 
It’s crucial that your Senators hear from you right now! It only takes a few minutes.
 
1.) Send an email letter directly to your Members. Simply fill in your name and address and personalize our provided template letter as you wish. 

2.) Call your Senators. Phone calls have an even bigger impact than emails and are just as quick and easy. Use the new Senate Call Alert page on our website to see your Senators’ phone numbers and our four sentence call script

REMINDER – there are just two days left to register for Lymphedema Lobby Days. The deadline is Sunday, March 5th. Together, we can pass the LTA!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
February 25, 2017: Lymphedema Lobby Days – registration deadline is near!

Our Lymphedema Lobby Days raise critical support for the Lymphedema Treatment Act and we can’t do it without you! This year’s event dates are March 26th-28th. 

The deadline to reserve your hotel room at a discounted rate is TOMORROW, February 26th. The final day to register to attend is one week later, Sunday, March 5th.

Additional details, including the links to register and reserve your hotel room, are on the Lobby Days page of our website.

Last year, over 70 patient advocates from around the country, ranging in age from 7 to 80, met with 214 offices from 38 states. 

Your participation will help us to make this year’s Lymphedema Lobby Days our largest and most impactful yet. I hope to see you there!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
February 22, 2017: 25 cosponsors have been added to our House bill – see if your Rep is one of them!
 
We have already gained 25 cosponsors since our House bill’s reintroduction! Click HERE to see the newly added names.
 
If your Representative is not on the list please continue to contact his or her office – once is rarely enough to get the job done! It only takes 5 minutes to email and call. The phone number and a simple script are below.

Thinking about attending our Lymphedema Lobby Days, March 26th-28th? You have just four days left to reserve your discounted hotel room by the cutoff date of February 26th. Registration will close one week after that on March 5th. 

Visit our Lobby Days page for additional details, and to register and book your hotel room. We will begin scheduling meetings March 1st, so the sooner we know who will be attending the better.

Thank you for your advocacy!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
February 16, 2017: Order your FREE info cards for Lymphedema Awareness Month!
 
March is Lymphedema Awareness Month! 
Our FREE cards are available in two sizes – order yours today to ensure they arrive by March. We also have lots of other great printable educational materials on our Increasing Awareness page.

Update on our Senate bill:
Our bill sponsors, Maria Cantwell (D-WA) and Chuck Grassley (R-IA) are planning to reintroduce our Senate bill in just a couple of weeks, to coordinate with the kickoff of Lymphedema Awareness Month!
 
House bill (HR930):

Our House bill was reintroduced earlier this month, on the 7th. A wonderful press release from our House sponsors can be read here. Please contact your Representative by email and phone if you haven’t since reintroduction this year. 

Lobby Days in DC are coming up!

Our 2017 Lymphedema Lobby Days are March 26th-28th – details and links to register and book your room are on our website. Discounted hotel rooms are available for just 10 more days, until February 26th.

Update on our Valentine’s Day Walk:

Our “Love the Lymphedema Treatment Act” walk on the 14th was a huge success! Our heartfelt thanks to all our teammates and donors! We are 95% of the way to reaching our goal of $20,000. We are keeping our CrowdRise fundraising page open until the end of the month, in case you meant to donate but haven’t had a chance. 

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

 
February 14, 2017: Our “Love the LTA Valentines Walk” is TODAY – please help us reach our goal!
 
 
Today is our annual Valentine’s Day Walk for the LTA! 
 
Team members from around the country are walking to raise crucial funds to support our 2017 Lymphedema Lobby Days in March. Thanks to their efforts, we are almost two thirds of the way to our goal of raising $20,000! 

Please consider making a donation through our CrowdRise page
Donations can also be made by check and mailed to: 
The Lymphedema Advocacy Group, PO Box 1682, Carrboro, NC 27510

We already have over 40 people from 18 states registered for our 2017 Lymphedema Lobby Days in Washington, DC, March 26th-28th. Discounted hotel rooms are available until February 26th or until sold out. 

For more information about Lobby Days, and to register and book 
your hotel room, please visit our website
.

Thank you for your support!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
February 9, 2017: The LTA has been Reintroduced – Contact Congress now!
 
We are thrilled to announce that the Lymphedema Treatment Act was just reintroduced in the House! You can view the bill here and a press release here.
 
 
We need your members of Congress as cosponsors, and it’s crucial that they hear from you, the constituent, right now. Even if they cosponsored last year, they need to do so again this year, so you must ask them.

Here are two simple steps you can take right now to ensure our bill gets a strong start this Congress:

1.) 
Send an email letter directly to your Members. Simply fill in your name and address and personalize our provided template letter as you wish.

2.) Call your Representative. Phone calls have an even bigger impact than emails and are just as quick and easy. Use our new House Call Alert page to see your Rep’s phone number and our four sentence call script.

The above actions take only a few minutes and make such a difference! 

Our bill will be reintroduced in the Senate soon, and we’ll let you know when to begin calling your Senators.  Together, we can pas the LTA!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
February 7, 2017: One week until our virtual walk – there’s still time to join the team!

On February 14th we’ll be hosting our third annual “Love the Lymphedema Treatment Act Valentines Day Walk.”
 
This is a virtual walk, so anyone, anywhere, with any ability level can participate. Please visit our CrowdRise page to join the team or simply donate. 

Registration for our 2017 Lymphedema Lobby Days, taking place March 26th-28th in Washington, DC, is now open. 

Discounted hotel rooms are available until February 26th, or until sold out. We already have over 30 people from 17 states registered. 
 
If you would like to connect with others attending or look for a roommate, please visit our Lobby Days event page on Facebook.

Thank you for your support of and participation in these events!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

January 2, 2017: Registration is OPEN for our 2017 Lymphedema Lobby Days, March 26th-28th!

Our Lymphedema Lobby Days raise critical support for the Lymphedema Treatment Act and we can’t do it without you! 

I hope you can join us in Washington, DC, March 26th-28th. Additional details, including the links to register and reserve your hotel room, are on the Lymphedema Lobby Days page of our website.

Last year, over 70 patient advocates from around the country, ranging in age from 7 to 80, met with 214 offices from 38 states. Your participation will help us to make this year’s Lymphedema Lobby Days 
our largest and most impactful yet. I hope to see you there!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
January 28, 2017: 2017 Lymphedema Lobby Days – Save the Date!

Save the date for our 2017 Lymphedema Lobby Days in Washington, DC, March 26th-28th!
 
No experience is necessary and everyone is welcome! Last year, over 70 patient advocates from around the country, ranging in age from 7 to 80, met with 214 offices from 38 different states to raise support for the LTA. We hope to have even more participation this year.

This is the first time we have planned a Lobby Days so early in a new Congress.We thank you for your understanding and patience while we finalize the hotel and other details. As soon as plans are finalized, which should be next week, we will let you know so that you can make your travel arrangements. You can read what past participants have had to say about their experience on the Lobby Days page of our website. 

Join the team for our Love the Lymphedema Treatment Act Valentine’s Day Walk on February 14th! 
 
This is a virtual event, so anyone, anywhere, with any ability level can participate. As a team member you can set your own goal for walking (or whatever activity is most appropriate for you) and set up a personalized fundraising page to share with family and friends. 

More details are available on our CrowdRise page. We also have a brief how-to video about joining the team and setting up your personal page.

Thank you for your support and participation in these events!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
January 14th, 2017: Show your LOVE, join our walk!

On February 14th we’ll be hosting our third annual “Love the Lymphedema Treatment Act Valentines Day Walk. 

This is a virtual walk, so anyone, anywhere, can participate or simply support our walk. Now is a great time to “join the team” if you are able.

As a team member you can:

  • Establish your own goal for the distance you will walk, or any activity that suits you best.
  • Set up a personalized page where you can customize the text and photos, and tell why this cause is important to you.
  • Get a link to share your personal page with friends and family.
  • Accept online donations through your page that will go straight to the Lymphedema Advocacy Group, so you do not have to deal with collecting checks or any fuss. 

More details are available on our CrowdRise page. We also have a brief how-to video about joining the team and setting up your personal page.

Please contact Julie Hanson, our board member and walk organizer, with any questions. Julie can be reached at jfh7928@gmail.com, or simply by replying to this email.

Thank you for your support and participation!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
December 27th, 2016: FAQ’s about the new Congress and how it affects the LTA
 
The new Congress begins on January 3rd. Many of the most frequently asked questions about what that means and how it affects our efforts are answered here.

Is this starting over? 
No, absolutely not.

Do cosponsors carry over from one Congress to the next? 
They do not, but once a members cosponsors a bill they will typically quickly and easily cosponsor the same bill again in subsequent Congresses. This is part of why we’ve been able to amass more and more support with each successive Congress.

How can I get my member(s) who cosponsored this year to do so again? 
We will alert you as soon as the bill is reintroduced and provide links to email and call your congressional offices. It is important that you ask them again.

How many cosponsors didn’t get reelected, or didn’t run for reelection? 

Of our 290 total cosponsors this year, 3 Senate and 36 House cosponsors will not be returning, and 3 House cosponsors won election in the Senate. (List of names below my signature.) If you live in a state or district of a newly elected member you can begin educating them and winning their support now, even though they can’t officially cosponsor until the bill is reintroduced.

Why didn’t the bill get passed during this Congress? 
Cosponsors are a major factor in determining which bills are moved forward and eventually passed, but they aren’t the only piece of the process. A small bill like ours will not go to the floor alone. It needs to be tacked on to a larger bill or put into a package of bills. The most likely scenario is for it to be included with other Medicare legislation. There ended up being no Medicare package in 2016, but there is expected to be a substantial one in 2017, and we must be ready for it by having a critical mass of cosponsors back on the bill early.

When will the LTA be reintroduced?
Our House and Senate bill sponsors, Rep Dave Reichert and Sen Maria Cantwell, are committed to reintroducing the bill as soon as possible in the new Congress. There is sometimes a log jam of bills at the start of a new Congress, so some, but hopefully only minor, delays could occur.

What can I do to help until the bill is reintroduced?
If you haven’t yet shared your story though our My Lymphedema Story campaign or joined your state’s advocacy team those are two free and important things to do now.

Will there be another “Lymphedema Lobby Days” in 2017?
Yes! Our tentative dates, which will be confirmed in January, are March 26th-28th. More information is on the Lymphedema Lobby Days page of our website. We hope to have a record number of lymphedema advocates participating.

If you have additional questions please don’t hesitate to contact us
Thank you for your support and Happy New Year!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
Cosponsors moving from the House to the Senate:
IL – DUCKWORTH
IN – YOUNG
MD – VAN HOLLEN
Cosponsors who were not reelected or who did not run for reelection:
SENATE 
CA – BOXER
IL – KIRK
MD – MIKULSKI
HOUSE
AZ – SALMON
AZ – KIRKPATRICK
CA – FARR
CA – HAHN
CA – HONDA
FL – BROWN
FL – CLAWSON
FL – CRENSHAW
FL – GRAHAM
FL – GRAYSON
FL – JOLLY
FL – MICA
FL – MILLER
FL – MURPHY
FL – NUGENT
FL – WEBSTER
GA – WESTMORLAND
HI – TAKAI
KY – WHITFIELD
LA – BOUSTANY
MD – VAN HOLLEN
MI – BENISHEK
NE – ASHFORD
NV – HARDY
NV – HECK
NY – ISRAEL
NY – GIBSON
NY – HANNA
NY – RANGEL
PA – FITZPATRICK
PA – FATTAH
PA – PITTS
TN – FINCHER
VA – RIGELL
WA – MCDERMOTT
WI – RIBBLE

 

December 20, 2016: Thank you, this was a momentous year for the LTA!

This was a tremendous year for the LTA! We are so grateful for our incredible grassroots advocates like you, who make their voices heard by writing letters, making phone calls, attending meetings and more!

We would also like to thank our 2016 Annual Sponsors, who make our work possible: FarrowMedImpediMedJobstLohmann & Rauscher, JoViPakJuzoLymphedema ProductsLympheDIVAsmediSigvarisSolaris. 

Some of the many accomplishments of the 114th Congress include:
LTA



In our next Newsletter we’ll answer the most frequently asked questions about what happens when a new Congress begins, and how that affects the LTA. We look forward to continuing our work in 2017. Happy Holidays!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

December 13, 2016: We are finishing 2016 with 289 Cosponsors!

We are incredibly proud to be finishing this year with 29 Senate and 260 House cosponsors!

LTA Timeline
 
Each Congress we have made it further than the last, and we will persist until all lymphedema patients have coverage for their compression supplies!
 
While we didn’t make it across the finish line this year, we are ready to hit the ground running as soon as the new Congress begins in January. 

Our bill sponsors, Rep Dave Reichert and Sen Maria Cantwell, will be reintroducing the LTA early in 2017, and we will continue to build on the tremendous accomplishments of this Congress.

From everyone here at the Lymphedema Advocacy Group, we hope you and your loved ones are enjoying the holiday season! 

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
December 7, 2016: Get Your FREE Lymphedema Education & Awareness Materials
 
We are pleased to share with you a new infographic that outlines the many causes of primary and secondary lymphedema in the United States, including incidence rates, entitled “Lymphedema: Not One Disease.”

This piece, along with our earlier “6 Things You May Not Know About Lymphedema” infographic and our free information cards, can all be seen, downloaded or ordered via the Increasing Awareness page of our website.

We are now half way to reaching our end-of-year giving goal. These funds will enable us to continue to create and distribute these educational, awareness-building materials. In 2016 we spent nearly $7,000 on printing alone, and distributed over 200,000 cards!

There are two easy ways you can donate:
 
By mailing a check toThe Lymphedema Advocacy Group, PO Box 1682, Carrboro, NC 27510
 
We are still hard at work advancing the Lymphedema Treatment Act in Congress. In our next newsletter we’ll have a complete report on our progress to date.
 
Thank you for your support!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

November 29, 2016: Help lymphedema patients this Giving Tuesday!

We are so grateful for the many people who have given of their time and talents to help advance lymphedema care! Today, on Giving Tuesday, we hope you will consider making a donation to support our work to increase awareness and knowledge about lymphedema, and pass the Lymphedema Treatment Act.

During this season of giving we are raising money to enable us to continue to provide our free information cards throughout 2017. This year we spent nearly $7,000 on printing alone, and distributed over 200,000 cards!

 
Our free information cards can be viewed and ordered here. Order some today to hand out in your area, and to tuck into Christmas cards and gifts to raise awareness. 
There are two easy ways you can donate:
 
Through PayPal
(no PayPal account needed, 
just a credit or debit card)
The Lymphedema Advocacy Group
PO Box 1682, Carrboro, NC 27510
Thank you for your support!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

November 15, 2016: LTA on the Hill this week! Call Congress!

We know you are eager to know if the LTA will pass this year. A complete summary of just how close we are is below my signature! The current Congress is now back in session and we have advocates meetings with dozens of offices throughout this week. 

This is the most important time for you to contact your congressional offices again, whether they have already cosponsored or not! Phone calls make a big impact, and everything you need to take action is right here. Most offices have voicemail after hours, so you can call any time. 

SAMPLE VOICE MESSAGE – feel free to personalize:

I’m calling about the Lymphedema Treatment Act, HR1608/S2373. I would like Senator/Representative [name] to please cosponsor this bill if he/she has not already, and support its passage during the lame duck session. Medical compression supplies are vital to the treatment and management of lymphedema. This bill will reduce healthcare costs while improving patient care.

CALL YOUR TWO SENATORS & HOUSE REP:

Senate phone numbers
House phone numbers

BEST EMAIL OPTION FOR YOU:

With such limited time left in this Congress, sending emails directly to each office’s Health Legislative Aide is our best email option. Email letters sent through the form on our website go to general delivery mailboxes and it takes time for them to be sorted. If you join your state’s advocacy team, which is completely free, we will send you the direct email address for the Health Aide in each of your members’ office. Click HERE to join, if you haven’t already.

SECONDARY EMAIL OPTION FOR OTHERS:

Anyone can use this form simply by filling in their name and address and sending our pre-written letter. Please encourage the general public to call their members of Congress and use this form to send a letter, by sharing this link via email and social media  – https://goo.gl/yYhCr0 

Help us get across the finish line this year by taking action today. Together we will pass the LTA!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
**Special Report on the LTA Status (11/15/2016)**
 
Know that your efforts are making a difference. Momentum is galvanizing important discussions. Your work and perseverance are helping the LTA. Thank you. 
 
Behind the scenes, our bill is being prepared for possible inclusion in end-of-year bills that may get marked for passage. We are working to position the bill under the best circumstances that may present themselves. We still have a window of opportunity in November and December to help pass the LTA in this 114th Congress. 
 
Policymakers and senior staffs have been mapping out year-end legislative packages. This includes health care policy and other urgent matters. Our lead sponsor Rep. Reichert has told key committee chairs that our bill is his top legislative priority.
 
The LTA is well positioned. These efforts show how far we have come in advocating for compression garment therapy: The House Ways & Means staff is hard at work reviewing the LTA with Medicare and the CBO (Congressional Budget Office). Rep. Reichert appealed to the HHS Secretary to set politics aside and help Congress make this happen.
 
During the week of November 14, when lawmakers returned to work in DC, we sent a Board team of advocates to visit many Senate and House offices. Our grassroots effort reaches across the country and continues to grow our support during extended recess periods. We have achieved an impressive and still-growing list of cosponsors. We continue to strive for our goal of a “super majority” of Congress Members!
 
You can help us achieve our goal to reach a “super-majority” of cosponsors. In the House we need only a tiny few more to reach 266! In the Senate, we have reached halfway to our goal of 60 in just 11 months. Check our website to watch it grow.
 
In this final stretch, please empower our Lead Sponsors, Sen. Cantwell and Rep. Reichert, by delivering your ENTIRE state’s support. Your letters/calls can help add cosponsors even into December.

Together we will pass the LTA!
 
 
October 31, 2016: There is still time to pass the LTA this year!

After election day, the current Members of Congress return to work. Newly elected and re-elected Members 
aren’t sworn in until January 3rd, at the start of the new Congress. In the interim, there will be approximately 
four in-session weeks, during which the current Congress will be completing their work for this year.
 
We are doing everything possible to get the LTA passed during these final weeks! We’ve come so far, and are now in the final mile of this marathon. Please help us get across the finish line this year!
 
If all three of your Members are not included in our Senate andHouse cosponsor lists, please continue to contact them WEEKLY through the end of this Congress – TAKE ACTION TODAY!

To help you secure the support of your Members of Congress, we also have three, free, recorded advocacy training webinarsthat can be viewed at any time.

Want to work with others? Join your state’s team and we’ll connect you, plus send you detailed information on how to directly contact the Health Aide in your Members’ offices.
 
Your constituent voice and your personal experience with lymphedema are powerful tools. Make your voice heard and be persistent. Together, we will pass the LTA!

Heather Ferguson 
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
October 28, 2016: Use Facebook and Twitter to support the LTA!

Attention social media users! If you use Facebook or Twitter, here are two FREE & EASY ways you can help pass the LTA.
 
To help support the work we do at the Lymphedema Advocacy Group, our partner GoodWorld is giving you a free $10 donation when you sign up by Monday, October 31st using this link. When signing up for your free donation, you will be asked to input your credit card, but don’t worry, you won’t be charged unless you choose to donate more than the free $10.
 
 
Almost all Members of Congress have Facebook and Twitter accounts, and it’s a great way to reach out to them and ask for their support of the LTA. Visit our Social Media page to find links to all Members’ accounts, as well as sample posts and tweets.
 
 
Thank you for your advocacy and support!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
October 17, 2016: 46 states have cosponsored the LTA, totaling over 270 members of Congress!
 
The LTA now has cosponsors from 46 states plus the District of Columbia, totalling 277 members of Congress! The only states not represented in our 28 Senate and 249 House cosponsors are Idaho, South Carolina, South Dakota and Wyoming.
 
 
There are over 40 rare diseases that result in primary lymphedema, and numerous causes of secondary lymphedema. Collectively, 3-5 million men, women and children in the United States are affected!

This information is outlined in a new document we have prepared to support your advocacy. If a congressional office has told you they don’t typically support “disease-specific legislation” or “single-disease bills” then this is precisely the information you need to send them next.

You can view and download this document here. On that page you will also find links to other essential information for sharing with offices.

Together, we can pass the LTA!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
October 4, 2016: New FREE Webinar: “Overcoming Objections – getting to YES with your Members of Congress”
 
Our newest webinar teaches you how to respond to objections and answer frequently asked questions. Content includes:
 

* The keys to getting a “yes”- persistence and patience.
* How to follow up with congressional staff after initial contact.
* Information and documents to reply to common concerns and questions.

You can access this FREE webinar any time on the Advocacy Training Webinars page of our website.

Over the last two weeks we’ve gained nine more House cosponsors and three more Senate cosponsors, bringing us to 249 and 28 respectively!

Between now and election day is a great time to connect with your members! They will all be in their home states and districts this month, so check their main websites, and also their campaign websites, for events near you!

If you need any help or have questions please respond to this email. Together, we can pass the LTA!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

September 19, 2016: More than 1/4 of the Senate has cosponsored the LTA, see if your Senators are on board!

Over the last two weeks, four more Senators have come on board, bringing us to 45% of our goal in the Senate!
 
See if your members of Congress have signed on: 27 Senate cosponsors / 240 House cosponsors
 
Congress is in session throughout September, then recess until after the election. If all three of your members (both of your Senators and your Representative) are not yet cosponors of the LTA, please contact them again and ask them to sign on this month!  

Leave a phone message such as the following with each office (and feel free to add your own comments):

Please cosponsor the Lymphedema Treatment Act (S2373/HR1608), to reduce healthcare costs while improving patient care. Compression supplies and garments are vital to the treatment and management of lymphedema.”
 
 
Prefer email? If you join your State Team we’ll provide you with the direct email address for the Health Legistaive Aide in each of your congressional offices. To learn more about our teams (which are completely free to join), and sign up, visit our State Teams page.

Together, we can pass the Lymphedema Treatment Act!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

September 6, 2016: Congress is back is session – tell them it’s time to pass the LTA!

Congress is back in session today and it’s time for us to double down on our efforts to get the LTA passed THIS YEAR!

We currently have 23 Senate cosponsors and 240 House cosponsors. This is already a phenomenal amount of support, but the greater our number of cosponsors the greater our chances of getting the LTA passed during this session of Congress.

We need both of your Senators and your Representative on board as cosponsors. Please take action again this week if they haven’t all signed on. Persistence is the key to success!

SENATE:

HOUSE:


If you have questions or need assistance please don’t hesitateto ask. Together, we can pass the Lymphedema Treatment Act!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
August 29, 2016: Get others involved and share our FREE info cards!
 
As summer comes to an end, it is vital that we increase our efforts to get the LTA passed this year. As you gather with friends and family this Labor Day weekend, take the opportunity to ask that they contact their members of Congress. 
 
If you’re hosting a party or cook-out you might consider setting up a laptop to make it easy for your guests to send an e-mail to Congress from our website.
 
To help spread the word and get others involved, we would be happy to send you some of our FREE information cards! The cards are available in two sizes, and each comes in packs of 50. Click HERE to place your order.
 
This is a grassroots effort and our continued progress depends on the involvement of people just like you. Please encourage your friends, family members, and colleagues to take action today!
 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
August 22, 2016: Call for Lymphedema Stories, Meet our Board, and more!

Have you attended any meetings, Town Halls or other events this summer, to ask your members of Congress to support the LTA? If so, we’d love to hear how it went. If you are prepping for one and need help, let us know or visit our District Meetingspage.

Constituent stories are powerful tools for getting members of Congress to cosponsor the LTA and we want yours! We have collected over 400 stories from lymphedema patients, caregivers, friends and family members, and healthcare professionals. Anyone whose life has been touched by lymphedema is encouraged to share their story to help pass the LTA this year. Visit our website for details on how to submit your story.

The 12th National Lymphedema Network International Conference is coming up 8/31-9/4 in Dallas, TX. If you are attending, please visit us at the Lymphedema Advocacy Group booth. I will also be speaking about the LTA during the Friday afternoon session, “Payback: Current Update on Reimbursement.” More information is available online. 

The Lymphedema Advocacy Group recently welcomed several new board members. You can learn more about our diverse, all-volunteer group on our website. Thank you for joining with us to make a difference!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

August 8, 2016: New FREE recorded webinar – “Create Great Meetings with Congressional Offices”

We are pleased to share with you our latest webinar, “Create Great Meetings with Congressional Offices.”

From this webinar you can learn:
 
  • How to shape your message – what to say and what to avoid.
  • How to use our downloadable Congressional Information Packet to guide you through your meetings.
  • Where to find other tools and resources on our website to help you prepare and make the most of your meetings.
You can view our “Create Great Meetings with Congressional Offices” webinar for FREE at any time. Just click the link, sign in by entering your name and email, and it will automatically play.
 
Also available now is our “ABC’s of Advocacy: Attitudes, Basic Facts & Confidence to Persuade” webinar.

Coming next: “Overcoming Obstacles: Learn to answer objections and frequently asked questions.” All webinars can be accessed at any time on our Advocacy Training Webinars page. 

If you have any questions about these webinars please contact our Advocacy Training Chair, Elaine Eigeman, at lepatientadvocate@gmail.com. Thank you for your advocacy!
 
Heather Ferguson

Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
July 25, 2016: We are 90% to our goal in the House!
 
Thanks to the outstanding work of our grassroots advocates, we are moving closer and closer to reaching our goal of a super majority (60% or more) level of support in both chambers!
 
We now have 23 Senate cosponsors (38% of our goal of 60) and 240 House cosponsors 
(90% of our goal of 266).
 
Attending a Town Hall or similar event is a great way to connect with your Members of Congress! Our FL Team Leader did just that. Her photo and recap are below.
 
Between now and election day there will be many opportunities.Check your Members’ websites for details. Often these events are advertised in their newsletters, so subscribing is a good idea. You can also call their offices to ask what events will be held in your area.
 
View your Senators’ websites here. 
View your Representative’s website here.

When attending an event prepare an “elevator speech” — a two to three minute pitch that concisely sums up what you are asking for and why. For tips on what to say and links to print materials to bring with you, visit our District Meetings page. 

If you have any questions or need assistance please don’t hesitate to ask. Together, we can pass the Lymphedema Treatment Act!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
Marco Rubio Town HallFrom Candace Bridegwater, FL State Team Leader: 
“I encourage everyone to seek out their Members of Congress AT HOME! I recently attended a Jacksonville Town Hall with Senator Marco Rubio. I wore my lymphedema pin, sat in the second row (first was reserved), chatted with seat mates about why I was there and gave out LTA info cards. I met several interesting, important people who said they would get involved and help us. Because I was near the front, it was easy to get to Senator Rubio when he finished and invited pictures. When I got my chance, I introduced myself, explained why I was there and that I wanted him to cosponsor the Lymphedema Treatment Act. He said he would look into it!”
 
 
 
July 18, 2016: Meet your members of Congress this summer!
 
The summer recess is your chance to meet with Members of Congress at home! Your efforts have helped us achieve remarkable support to date: 23 Senators240 Representatives.

Now is the time to ask all remaining Members in your state to cosponsor, and build on our momentum to pass the LTA in 2016, before the 114th Congress comes to an end.

It’s easy and rewarding to get involved. Visit our District Meetings page for everything you need to schedule, prepare for, and executelocal meetings with your Members of Congress.
 
You can make a difference. Our webinars will teach how to meet with your Members in State and District offices to rally cosponsors during this long Congressional recess.
 
NOW ~ Watch our recorded “ABCs of Advocacy” webinar to learn the basics.

NEXT ~ Coming soon is our “Create Great Meetings” webinar, where you’ll dive in to the nuts & bolts of effective meetings.

Cosponsors cannot be officially added while Congress is in recess, but they can still commit their support during this time. Let’s keep the momentum going!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
July 11, 2016: Please call your members of Congress this week!
 
This is the last week Congress is in session until September 6th! Cosponsors cannot be officially 
added while Congress is in recess, so we want to make a push to get as many more offices signed on 
this week as possible!
 
Please take a few minutes to leave a phone message at any of your congressional offices not yet 
on board, asking them to sign on this week. Remember, we need both of your Senators and your 
Representative cosponsoring the LTA.


Everything you need is below, or use our Phone Action Alert!
 
Numbers to call: Senate phone listHouse phone list.

Current cosponsors: Senate listHouse list.

Talking Points:

  1. Identify yourself as a constituent.
  2. Say you are calling to ask for your Senator’s/Representative’s support of the Lymphedema Treatment Act.
  3. Give the appropriate bill number and cosponsors to date – S. 2373 and 21 cosponsors for the Senate, H.R. 1608 and 237 cosponsors for the House.
  4. Very briefly state why this bill is important to you.
  5. Conclude by saying you hope he or she will sign on as a cosponsor THIS WEEK, before departing for recess.
Your voice matters! Please make your calls today!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
July 6, 2016: Send us your responses from Congress!
 
Have you heard back with a form letter? If you’ve received a reply from a member of Congress, please let us know so we can help you answer any questions or concerns and get them to sign on as a cosponsor. Please send a copy of the letter to us at info@LymphedemaTreatmentAct.org
We want more than support and consideration, we want and need cosponsors! 
Just because a member does not serve on one of the committees that our bill has been referred to does not mean they cannot cosponsor. This is a common misconception. The only meaningful support a member of Congress can give at this stage is to sign on as a cosponsor, and ALL members are eligible to do so.
Thank you for sending us any replies you have received so that we can follow up on your behalf!
 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
June 22, 2016: New “ABC’s of Advocacy” FREE recorded webinar now available
 
We are pleased to share with you our new webinar, “ABC’s of Advocacy: Attitudes, Basic Facts & Confidence to Persuade.
 
From this recorded 30-minute webinar you can learn how & why to:
 

  • Form relationships with members of Congress and their staff.
  • Shape teams to make your advocacy more fun & effective.
  • Confidently increase support for the LTA in your local district.
  • Get useful tools to make your meetings effective.
 
You can view this recorded webinar for FREE at any time via our Advocacy Training Webinars page. Just click the link, sign in by entering your name and email, and it will automatically play. 
 
This is the first in a series of new webinars we will be bringing you throughout the summer! Coming next: “Create Great Meetings: know your message & use tools to shape effective meetings.”
 
If you have any questions about our webinars please contact Elaine Eigeman, our Advocacy Training Chair, at lepatientadvocate@gmail.com. Thank you for your involvement!
 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

June 15, 2016: Your Stories were part of last week’s LTA Committee Hearing!

Last week, the Lymphedema Treatment Act took another big step forward when it was included in the “Legislation to Improve and Sustain the Medicare Program” hearing.

If you’ve watched the video clip of Rep Reichert’s testimony about the LTA, you know he featured two patient stories. What you didn’t see was that we armed Reichert with a book of over 400 lymphedema stories that we have collected over the past several years, to share with his congressional colleagues!

This book was prepared specifically for this hearing, but we will be printing others at key times as our bill progresses. It’s not too late for your story to be included in the next edition!

Our stories are powerful and they illustrate why passage of this bill is so important. Please share yours today!

For other ways you can support passage of the LTA please visit our Increasing Support page. Thank you for making a difference!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
June 10, 2016: The LTA was part of a Congressional Hearing this week!
 
This week we cleared another hurdle on the way to passing the Lymphedema Treatment Act!

On Wednesday, June 8th, the Ways and Means Heath Subcommittee conducted a hearing entitled “Legislation to Improve and Sustain the Medicare Program.” The LTA was one of the bills included in this hearing!

Watch our sponsor, Representative Dave Reichert, deliver his testimony, during which he also commends the work of our patient advocates

This is yet another major milestone, but we’re not there yet. Pleasecontact your members of Congress using the links below. Once is notenough – the squeaky wheel gets the grease!

If they are not yet cosponsors (Senate cosponors / House cosponsors)explain why this bill is so important to you and ask them to sign on. If they are, say thank you and ask them to do whatever they can tomake sure the LTA is passed this year.

We’ve come so far – please take action today!

 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

June 3, 2016: Spread awareness – order your FREE info cards!

Our wildly popular “6 Things You May Not Know About Lymphedema” infographic is now available in Spanish too!

To download the English or Spanish version of our infographic flyer, or order our FREE information cards (which have the infographic on the back) please visit our Increasing Awareness page.

If you are a Facebook user, please help us spread the word about and increase support for the LTA by sharing this post on your page.

You can also leave a comment or post on the Facebook pages of your members of Congress by visiting our Social Media Action Page. There you will find links to your Rep and Senators’ accounts and sample posts.

To see which members of Congress are already cosponsoring the LTA go to: Senate billHouse bill.

To call or email your members of Congress and ask them to cosponsor the LTA, and other ways to get involved, please visit the How You Can Help menu on our website.

Thank you for your support!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
May 24, 2016: The American Medical Association has endorsed the LTA!
 
We are thrilled to announce that the American Medical Association has endorsed the Lymphedema Treatment Act! They join a long list of supporting groups, which can be seen here. We are very proud to have such broad and strong stakeholder support.

If you are a Twitter user, please help us spread the word about and increase support for the LTA by retweeting this tweet to your followers.

You can also tweet your members of Congress by visiting our Social Media Action Page. There you will find links to your Rep and Senators’ accounts and sample tweets.

To see which members of Congress are already cosponsoring the LTA go to: Senate billHouse bill.

To call or email your members of Congress and ask them to cosponsor the LTA, and other ways to get 
involved, please visit the How You Can Help menu on our website.

Thank you for your support!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
May 17th, 2016: 27 new cosponsors in 27 days!
 
In the 27 days since our Lymphedema Lobby Days we’ve gained 27 more cosponsors!
 
That’s incredible progress, but we still need your help to reach our goal of having a super majority (60%) level of support in both the House and Senate.
 
Most people cannot travel to DC, but you can have meetings with your members of Congress that are just as effective right in your home districts! We have a new page on our website to help you do just that.
 
On the new District Meetings page you will find:

  • How to schedule your meeting.
  • How to prepare for your meeting.
  • What to bring with you.
  • Tips for executing a successful meeting.
  • And how to follow up afterwards to make sure that 
    your Representative/Senator signs on as a cosponsor.
In an election year, members of Congress spend more time at home in their districts, and are especially interested in meeting with their constituents. It can take weeks or months for them to work you into their schedule, however, so you don’t delay in getting your meeting request submitted.
 
Visit our District Meetings page today to get started!
 
Remember that some offices only need to be asked, while others need a lot of education and persuasion from their constituents. Every meeting makes a difference and moves us closer to passing the LTA and having coverage for lymphedema compression supplies!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
May 12, 2016: Help us pass the LTA by sharing your Lymphedema Story!
 
Our stories are powerful, and they illustrate to members of Congress why there is an urgent need to pass the Lymphedema Treatment Act!
 
Please share your lymphedema story with us, so that we can share it with your members of Congress and win their support!

Anyone whose life has been touched by lymphedema can participate – patients, caregivers, friends or family members, healthcare professionals, etc. Tips on what to include in your story are listed on the submission form.

As of today we have 223 House cosponsors and 16 Senate CosponsorsPlease share your story and help us get the Lymphedema Treatment Act passed this year!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
May 6, 2016: We have Advocacy Teams in all 50 States! Not yet a Member? Join your team today!
 
We have grassroots advocacy teams in all 50 states! If you haven’t joined your state’s team yet here are a few reasons why we hope you will consider it.

  • No prior advocacy experience is needed.
  • The time commitment is entirely up to you.
  • It won’t cost you a thing and you can do everything needed to increase support for the LTA right from home.
  • If your Representative and Senators are not yet cosponsors, you will receive additional support to get them signed on.
  • If your Representative and Senators are already cosponsors, you can assist others in reaching that goal.
  • The more people that get involved the sooner lymphedema patients will have coverage for their vital compression supplies!
 
Additional information and a link to join your team can be found on the State Teams page of our website.
 
After joining you will be introduced to the other members of your team via email. If you have any questions please respond to this message. 

As of today we have 220 House cosponsors and 16 Senate Cosponsors. Join your team and help us get the Lymphedema Treatment Act passed this year!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
April 28, 2016: We’ve reached 220 cosponsors – that’s more than 50% of the House!
 
Thank you so much for helping us reach this huge milestone of support in the House! To see if your Rep is one of our 220 House cosponsors click here.
 
I’m often asked, “How many cosponsors do we need?” In reality, there is no magic number, but the more we have the stronger our chances of getting the Lymphedema Treatment Act passed this year!

The best case scenario is to have a super majority in both the House and Senate. That means 60% or greater of all members in each chamber. As we strive to reach this goal, we especially need to focus on the Senate, where our bill was introduced much more recently.
 
To see if your Senators have signed on yet click here. If one or both have not, please continue to ask for their support.
 

Call your SenatorsCall your Rep – After entering your zip code, talking points, the number to call, and staff member to ask for are provided. In most cases you are simply leaving a message, but this step is so important!

Email your Senators and Rep – Some offices need little more than to be asked. Others need a lot of education and persuasion from their constituents. Every email and call makes a difference!

Thank you for your advocacy. Together, we can pass the Lymphedema Treatment Act!
 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
 
 
April 22, 2016: Lobby Days Recap – 214 meetings in two days!
 
This week’s 2016 Lymphedema Lobby Days were a huge success! Over 70 patient advocates, hailing from 21 states plus the District of Columbia, met with 214 offices from 38 different states! They also delivered information packets to all other offices who have yet to cosponsor!

We have already gained 13 new cosponsors for the Lymphedema Treatment Act, but it will take several weeks at least before we know the full fruits of our labors. 

Our participants ranged in age from 7 to 72, and spoke so eloquently and passionately about the importance of compression therapy and passage of this bill. 

Now it’s your turn – if you haven’t yet contacted your members of Congress THIS WEEK, please do so today:

  1. Call your Senators
  2. Call your Representative
  3. Email your Rep and both Senators in one step
  4. Contact your members of Congress via Social Media

Hearing from constituents is so important! Please reinforce our work this week by adding your voice. 
If a member of Congress is already a cosponsor, thank them for their support. If they are not, 
urge them to join the 212 House members and 16 Senators already cosponsoring this bill.

Together, we can pass the Lymphedema Treatment Act!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
April 19, 2016: We might be meeting with your members of Congress today!
 
Today and tomorrow, over 70 patient advocates from around the country will be meeting with over 150 congressional offices! Please help increase the impact of our visit by calling your members of Congress to voice your support for the Lymphedema Treatment Act!

Hearing from constituents by phone is so important, and the advocacy forms on our website make it quick and easy. After entering your zip code you’ll be shown the number to call, staff members to ask for, and a list of talking points.

In most cases you will simply be leaving a message for the Health Legislative Aide, but even this simple act, that takes only one minute, really makes a difference!

Click here to call you Senators.  Click here to call your Representative.

Thank you for making these phone calls and making a difference. Together, we can pass the Lymphedema Treatment Act!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
April 12, 2016: We just surpassed 200 House cosponsors for the LTA!
 
Thank you to everyone who helped us reach this milestone! You can see the complete list of 201 House cosponsors here, and 13 Senate cosponsors here.

If you don’t see your Representative and Senators’ names on the lists please contact them again, via email letterphoneFacebook or Twitter.

The Social Media page of our website has links to all congressional Facebook pages and Twitter handles. There you will also find sample posts and tweets. All you have to do is copy, click, paste, and send.

Please take a moment to contact your Representative and Senators today if they are not yet supporting the LTA! 

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
April 5, 2016: Help us build momentum with just a click!
 
In exactly two weeks from today, patient advocates from around the country will spend two days in Washington, DC, meetings with congressional offices to increase support for the Lymphedema Treatment Act. Even if you can’t join us for our Lobby Days on April 19th and 20th, you can make a difference.

Please take a moment to sign this letter to your members of Congress, this week, even if you have written in the past.

The more constituents they hear from in advance of our visit the more likely they will be to say YES when we ask for them to cosponsor our bill. We are making great strides – we have 195 House cosponsors and 12 Senate cosponsors – but the greater the number the greater our chances of reaching our goal of getting the bill passed THIS YEAR!

When your members of Congress hear from you it makes a difference. Thank you for signing the letter today!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
March 31, 2016: Lymphedema Lobby Days Registration Deadline
 
Just four days left to register to take part in our 2016 Lymphedema Lobby Days,  April 18th-20th in Washington, DC! 
 
Monday, April 4th is the registration deadline to join the over 70 patients, family members, friends, therapists, and doctors – ranging in age from seven-years-old to senior citizens – who are already signed up!  
 
 
No experience is required and all are welcome! Our Lobby Days held during the last session of Congress garnered dozens of new cosponsors for the LTA. You can be a part of making 2016 our biggest and most impactful visit to the Hill yet!
 
 
I hope to see you at Lymphedema Lobby Days!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
March 14, 2016: Lymphedema Lobby Days Registration Deadline is Approaching!
 
Register now for our 2016 Lymphedema Lobby Days, taking place April 18th-20th in Washington, DC! 
 
We are just three weeks away from the registration deadline of April 4th, and one week from the March 21st deadline to reserve a hotel room in our discounted group block.
 
 
No experience is required and all are welcome! Our Lobby Days held during the last session of Congress included 85 participants from 24 states, and garnered dozens of new cosponsors for the LTA. We hope 2016 will be our biggest and most impactful visit to the Hill yet!

We already have over 50 people registered and are beginning to schedule meetings. Please don’t delay in registering if you are able to join us. We’d love to have you!

 
I hope to see you at Lymphedema Lobby Days!
 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
March 6, 2016: LTA Congressional Sponsors Honored with Award!
 
Happy Lymphedema Awareness Day!
 
Today marks the 22nd annual Lymphedema Awareness Day, a tradition started by Saskia Thiadens, founder of the National Lymphedema Network (NLN). Each year, on this day, the NLN honors inspirational patients, exceptional caregivers, and individuals who have made remarkable contributions to bettering the lives of those who suffer from lymphedema. 
 
This year, the NLN has selected our congressional leadership team – the sponsors of our House and Senate bills – in recognition of their outstanding work to improve insurance coverage for compression supplies through passage of the Lymphedema Treatment Act!

Tomorrow, on behalf of the National Lymphedema Network, I will have the pleasure of presenting these awards in person to some of the offices listed below. I have included their phone numbers below my signature, in case you would like to call them to say, “Thank you for sponsoring the Lymphedema Treatment Act, and please do everything in your power to ensure that this bill is passed this year!

These members of Congress are fighting for us, and we should let them know how much we appreciate it. Several weeks ago our lead House sponsor, Rep Dave Reichert, made a passionate plea, calling on Health and Human Services Secretary Sylvia Burwell to help us in our quest for coverage of compression supplies. You can view this must-see video clip here.

This statement was made in the context of a budget hearing discussing the President’s cancer “moonshot” initiative, and hence why Rep Reichert refers specifically to cancer related lymphedema, but he is working to improve care for all lymphedema patients, and the LTA will ensure coverage of compression supplies for lymphedema from all causes.

Make sure to continue to write and call your own members of Congress, as many times as it takes, if your Representative and both Senators are not yet cosponsors. The links to all our advocacy forms that make it easy to take action are listed under the How You Can Help menu along the left hand side of our website.

Together, we CAN and we WILL pass the Lymphedema Treatment Act!

Heather Ferguson

Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
Here are the numbers to call our Congressional leadership 
team and say, “Thank you for sponsoring the Lymphedema 
Treatment Act, and please do everything in your power 
to ensure that this bill is passed this year!

SENATE:
Senator Maria Cantwell (WA) – 202-224-3441
Senator Chuck Grassley (IA) – 202-224-3744
Senator Mark Kirk (IL) – 202-224-2854
Senator Chuck Schumer (NY) – 202-224-6542

HOUSE:
Representative Dave Reichert (WA) – 202-225-7761
Representative Earl Blmenauer (OR) – 202-225-4811
Representative Leonard Lance (NJ) – 202-225-5361
Representative Jan Schakowsky (IL) – 202-225-2111

 
 
March 1, 2016: Cosponsor Update on our House and Senate Bills 
 
We now have 189 Representatives cosponsoring our House bill, HR 1608, and 11 Senators cosponsoring our recently introduced Senate companion bill, S 2373. Click here for the House list, and click here for the Senate list.

The more cosponsors we have the greater our chances of getting the Lymphedema Treatment Act passed THIS YEAR! If your Representative and both of your Senators are not yet on these lists then please write and call again. The links to all our advocacy tools that make it easy for you to take action are under the How You Can Help menu along the left hand side of our website. 

Our 2016 Lymphedema Lobby Days are April 18th-20th in Washington, DC. The deadline to register is April 4th, but the sooner we know who will be attending the better. We need to begin working on the meeting schedule in mid-March. For complete information, and the links to register and book your hotel room, please visit the Lobby Days page of our website.

Do you want to work with others to increase support for the LTA, but can’t come to DC? Join your State Team! We have teams in all 50 states. There is no travel or minimum time commitment required. More information and the link to join can be found on our State Teams page.

Together, we can pass the Lymphedema Treatment Act!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
February 17, 2016: Order Your Free Info Cards for Awareness Day & Month!
 
March is Lymphedema Awareness Month, and March 6th is Lymphedema Awareness Day!
 
If you are hosting or attending an event, or just want to increase awareness in your area, we would be happy to send you some of our FREE information cards!

The cards are available in two sizes, and each comes in packs of 50. To place your order, please visit our Increasing Awareness page.

Also on that page you can find a poster-size file of our “6 Things You May Not Know About Lymphedema” infographic, table signs, and other great tools for raising awareness. 

A big thank you to all our walkers and donors, who made our Valentine’s Day Walk for the LTA such a success! To date we have raised $13,370 to support our efforts to pass the LTA this year! 

If you meant to donate but didn’t get a chance, we’ll be keeping our CrowdRise page open until the end of the February, in the hopes of reaching our goal of $15,000. Every dollar makes a difference!

With gratitude,
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
February 14, 2016: Show your Love for the LTA – our Valentine’s Day Walk is Today!
 
Today, lymphedema advocates around the country will be walking to raise funds to support passage of the Lymphedema Treatment Act! 

This is our big fundraiser for 2016 and we hope you can help us reach our goal. We are already 75% of the way there! To make your donation, please visit our CrowdRise page.

We are an all-volunteer group, and every dollar raised goes directly into our advocacy efforts to pass the LTA. Every member of our board has a personal connection to this issue and has given generously of themselves to get us where we are today. (You can learn more about the Lymphedema Advoacy Group and our board members here.)

Please join us and help us get the LTA passed THIS YEAR! And if you are one of our walkers, please send us your selfies so that we can share them on social media.

Thank you for your support!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org 

 
 
February 12, 2016: Amazing Video of our LTA bill sponsor addressing the HHS Secretary about the need for Compression Coverage!
 
On Wednesday of this week, LTA lead sponsor, Congressman Dave Reichert, made a passionate 
statement calling on HHS Secretary Burwell to help improve lymphedema‬ treatment for patients!
 
You can watch the amazing video by clicking here.
 
Congressman Reichert’s statement was made in the context of the President’s “moonshot” initiative to accelerate cancer research, hence why only cancer-related lymphedema is mentioned, but the LTA will provide coverage of all patients, regardless of the cause of their lymphedema.

Our House bill now has 188 cosponsors, and our recently introduced Senate companion bill has 9 cosponsors, but the more we have the greater our chances of reaching our going of getting the LTA passed THIS YEAR!

Even if you have contacted your members of Congress repeatedly and they haven’t signed on yet 
don’t give up – new members are signing on every week! Some take more persuading than others, 
but we cannot rest until all lymphedema patients have the coverage they need and deserve.
 
The links to take action are:
Together, we can pass the Lymphedema Treatment Act!

Heather Ferguson
Founder & Executive Director
LymphedemaAdvocacy Group
LymphedemaTreatmentAct.org

 
 
February 11, 2016: Three Days until our Valentine’s Day Walk for the LTA!
 

This Sunday, February 14th, lymphedema advocates around the country will be walking in their own communities to raise support for the Lymphedema Treatment Act! 

There’s still time to join the Team, and set your own distance and fundraising goal. Or, you can simply donate in support of all those who will be walking on behalf of lymphedema patients everywhere. 

Please visit our CrowdRise page to join or support our walk. 

We are already more than half way to our walk fundraising goal, and need your help to reach the finish line! All proceeds from this year’s walk will support our 2016 Lymphedema Lobby Days, coming up in April. 

Registration for Lobby Days is now open. All are welcome and no experience is required. 
For more information about Lobby Days please visit our website.
 
Thank you for your support!

Heather Ferguson
Founder & Executive Director
LymphedemaAdvocacy Group
LymphedemaTreatmentAct.org

 
 
February 5, 2016: Lymphedema Lobby Days Registration is Now Open & 9 Days until our Walk for the LTA!
 
Registration for our 2016 Lymphedema Lobby Days, taking place April 18th-20th in Washington, DC, is now open!
 
 
No experience is required and all are welcome! Our Lobby Days held during the last session of Congress included 85 participants from 24 states, and garnered dozens of new cosponsors for the LTA. We hope 2016 will be our biggest and most impactful visit to the Hill yet!

We are also just 9 days away from our Valentine’s Day walk for the LTA on February 14th. This is a virtual walk, so anyone, anywhere, can participate.

You can join The Team (and set your own fundraising and distance goal if you like) or simply donate.Please visit our CrowdRise page for details. Thank you for your support! 
 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
January 14, 2016: Our New Year’s Resolution – get the LTA passed THIS YEAR!!
 
The House and Senate are back in session and we need to get back 
to work too. Our goal is to pass the Lymphedema Treatment Act 
THIS YEAR! To do that, we need your help more than ever.

Click here to see if your two Senators are cosponsors of our newly introduced Senate bill. Click here to see if your Representative is a cosponsor of our House bill. 

If all three of your members of Congress aren’t cosponsors yet, 
then we need you to take action:

 
We are exactly one month away from our February 14th,Valentine’s Day virtual walk for the LTA! You can choose to join The Team (and set your own fundraising and distance goals) or simply donate. Please visit our CrowdRise page for details about our walk.

All of our board members have already donated, and now we need your help to reach our fundraising goal. Everything raised will be put towards making our 2016 Lymphedema Lobby Days are biggest and most impactful visit to date! For details about this year’s Lobby Days, April 18th-20th, please visit our website.

Thank you for your continued advocacy and support – 
together we can pass the Lymphedema Treatment Act!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

January 7, 2016: Show your LOVE for the LTA by participating in our Valentine’s Day Virtual Walk!

On Valentine’s Day, February 14th, you can show your support for lymphedema patients and the Lymphedema Treatment Act by helping us raise funds for our upcoming Lymphedema Lobby Days in Washington, DC, taking place April 18th-20th

Anyone, anywhere, can take part in our virtual walk – it’s fun and easy! You can choose to join an existing team, create your own team, orsimply donate. Check out our Crowdrise page for details. 

This will be our third Lymphedema Lobby Days in as many sessions of Congress. Over 100 volunteers are expected to travel from around the country to lobby Members of Congress for the passage of the Lymphedema Treatment Act (LTA). Lobby Days has traditionally garnered dozens of critical new cosponsors for the LTA, however, the event is not without expense. This is where you come in! Most people cannot join us in Washington, though all are welcome, but you can help support our efforts by donating today!

This is a critical year for the Lymphedema Treatment Act. We have made amazing progress, but we need your help to make it over the finish line by the end of 2016! Once a two year session of Congress is finished the whole process starts over and the bill has to be re-introduced. Passing legislating 
is not easy and we hope to finish the job during THIS Congress.

 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

December 31, 2015: 2015 Was A Great Year For Lymphedema Advocacy!

Thank you! We’ve had a very successful year, and it would not have been possible without your help contacting members of congress and spreading awareness about lymphedema and the Lymphedema Treatment Act. 

Highlights of our accomplishments this year include:

 

We would also like to give special thanks to our 2015 industry partners, whose support is vital to our efforts: mediUSASolarisLohmann & RauscherJuzoLympheDIVAsSigvarisImpediMedSolideaLymphedema Products; and the BSN Medical Family, which includes JobstJoViPak, and FarrowMed

Let’s keep up the momentum for 2016! Please visit the “How You Can Help” menu on our website for all the ways in which you can support passage of the Lymphedema Treatment Act – http://lymphedematreatmentact.org

Happy New Year!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

December 15, 2015: New FREE info cards with our “6 Things You May Not Know About Lymphedema” infographic!

We are thrilled to now have available our FREE cards with information about the LTA on one side, and our “6 Things You May Not Know About Lymphedema” infographic on the other side! 

To place your order click here or on the image to the right.

We have distributed over 200,000 info cards in 2015 alone! Please help us to be able to continue to provide these FREE educational materials, and support our work to pass the Lymphedema Treatment Act.

If you haven’t already, I hope you will consider making a donation to the Lymphedema Advocacy Group during this season of giving. We are an all-volunteer, 501c4 nonprofit organization, and every gift, in any amount, makes a difference!

 
And in case you haven’t had a chance to contact your Senators since the LTA was introduced in the Senate last week, please do so today. If you’ve already written, please take the next step and call. Hearing from you is so important!
 

 

Thank you for your support!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
 
December 9, 2015: The LTA was just introduced in the Senate! Contact your Senators now!
 
Wonderful news – Senator Maria Cantwell (D-WA) along with Senators Chuck Grassley (R-IA), Mark Kirk (R-IL) and Chuck Schumer (D-NY) have just introduced the Lymphedema Treatment Act in the Senate! You can read the press release here.
 
It is extremely important that your Senators hear from you. Please contact your Senators to ask them to cosponsor the Lymphedema Treatment Act! 
 
A template letter is provided, but do take a moment to add a few personal sentences after the opening paragraph, to make your letter more effective.
 
Our House bill has an incredible 170 cosponsors! Now we need to build support for our Senate bill too.
 
Please send an email letter to your Senators today!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
December 3, 2015: See if your Rep is one of our 166 cosponsors!
 
Myself and other members of the Lymphedema Advocacy Group board have been in Washington, DC this week. By the end of today we’ll have met with more than 70 offices! 

Even more incredible is that our cosponsor count is now at 166! That’s a mighty impressive number for any bill, but we need your help to reach our goal of 218 cosponsors, which would be 51% of the House of Representatives. 

Click here to see if your Rep is one of our cosponsors. 

If he or she is not, please send an email letter by clicking here, and add why this bill is important to you to the template letter that is provided.


Or better yet, call their office! You’ll find the phone number, person to ask for, and talking points by clicking here.

It only takes a couple of minutes to make a difference. Please contact your Rep’s office by email or phone today!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
December 1, 2015: Support Lymphedema Patients today, on Giving Tuesday!
 
Please help us help lymphedema patients by supporting 
our work to pass the Lymphedema Treatment Act!
 
On this Giving Tuesday, please consider making a donation to support the Lymphedema Advocacy Group. We are an all-volunteer, 501(c)(4) nonprofit organization. Every gift, in any amount, makes a difference!

Nine years ago this week, at two months of age, my son Dylan was hospitalized for unexplained swelling. He would later be diagnosed with lymphedema, a diagnosis that would change my life as well as his. 

All throughout this week, myself and other members of the Lymphedema Advocacy Group are on Capitol Hill advocating for passage of the Lymphedema Treatment Act. With over 160 cosponsors, we are making tremendous progress, but need your help to get the job done!

On behalf of lymphedema patients everywhere, thank you for your support!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
November 24, 2015: Support Lymphedema Patients on Giving Tuesday!
 
Giving Tuesday kicks off the charitable season!
 
‘Tis the season for giving, and we hope you will remember the Lymphedema Advocacy Group when making your end-of-the-year donations. 

For the first time, we are participating in Giving Tuesday. All money raised will go towards our 2016 Lymphedema Lobby Days. Our Giving Tuesday goal is to raise $2000, which will help further our advocacy efforts on Capitol Hill and beyond. 

Highlights of our accomplishments this year include:

  • Reintroduction of the Lymphedema Treatment Act by an ideally positioned bipartisan sponsorship team.
  • Distribution of over 200,000 free information cards, to spread awareness about lymphedema and the LTA.
  • Production of a wildly popular Lymphedema Infographic and a Public Service Announcement video.
  • Enabling individuals to send thousands of messages to Congress using the advocacy tools on our website.
  • Production and presentation of free Lymphedema Advocacy Training webinars.
  • Formation of grassroots Advocacy Teams in all 50 states.
  • Garnering of over 160 cosponsors, more than in any past Congress and a very impressive amount for any bill!

Donations can be made via check, through PayPal (no PayPal account needed, only a credit or debit card) or through a new giving tool called Good World. Good World allows you to donate without leaving social media. You can learn more about GoodWorld and register in advance at: https://goodworld.me/social-login/connect?

Thank you in advance and I hope you and your loved ones have a very Happy Thanksgiving!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

November 22, 2015: 2016 Lymphedema Lobby Days Dates Announced & Lymphedema Awareness Bus 2015 Tour Recap

Save the date! We hope you will be able to join us for our 2016 Lymphedema Lobby Days in Washington, DC, which will be taking place April 18th-20th. 
 
No experience is required and everyone is welcome! Additional details will be available soon. You can learn more about this exciting, educational, and inspiring event on the Lobby Days page of our website, and read what participants at our last Lobby Days had to say about their experience.

And I’m pleased to share with you this news from one of our Florida State Team members, who recently wrapped up her Lymphedema Awareness Bus tour. Judy and her husband spent 5 months, and travelled through 20 states, spreading awareness about lymphedema and the Lymphedema Treatment Act everywhere they went! You can read a complete recap from Judy, and hear about the places they visited and people they educated, on our Facebook page: https://www.facebook.com/lymphedematreatmentact/

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
 
November 13, 2015: Free Tools to heal Spread Awareness!
 
Here are 5 free, quick and easy ways help spread awareness about lymphedema and support for the Lymphedema Treatment Act!

1. Order our free information cards to distribute in your area. Just click on the link in the top paragraph –http://lymphedematreatmentact.org/increase-awareness/.

2. Use our Tell-A-Friend form to invite up to ten people at once to visit our website – http://www.capwiz.com/lymphedematreatmentact/taf/.

3. Like our Facebook page and invite your friends to do the same – https://www.facebook.com/lymphedematreatmentact/.

4. Follow us on Twitter and retweet our tweets – https://www.facebook.com/lymphedematreatmentact/.

5. Share our Public Service Announcment video about lymphedema and the LTA – https://youtu.be/GQZuvWs4-Pc.

 
And don’t forgot about our free advocacy training webinars. An evening time slot was just added for November 24th. For details and to sign up go to – http://lymphedematreatmentact.org/advocacy-training-webinars/.

Thank you for your help spreading the word and raising support for the LTA!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
November 9, 2015: Free Advocacy Training Webinar – Nov & Dec Dates – Register Today! 

 
We are pleased to announce four dates for our advocacy training webinar entitled “Advocate for 
the LTA and Meet Your Members of Congress!”

Topics will include:

  • How to become an effective advocate for the Lymphedema Treatment Act (LTA).
  • Meeting with your members of Congress in your local district.
  • Useful tools to make your meetings effective.
  • Easy ways to persuade your members ofCongress to cosponsor the LTA.
  • How to form advocacy relationship with members of Congress and their staff.
 
These webinars are free, but you must sign up in advance by clicking on the date you would like to attend. After registering, you will receive a confirmation email containing information about joining the webinar.
 
If you have any questions about the webinars please contact Elaine Eigeman, our Advocacy Training Chair, at lepatientadvocate@gmail.com.

We hope you can join us for one of these dates!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
October 22, 2015: We have Advocacy Teams in all 50 States! Not yet a Member? Join your team today!
 
We now have grassroots advocacy teams in all 50 states! If you haven’t joined your state’s team yet here are a few reasons why we hope you will consider it.
 

  • No prior advocacy experience is needed.
  • The time commitment is entirely up to you.
  • It won’t cost you a thing and you can do everything needed to increase support for the LTA right from home.
  • If your Representative is not yet a cosponsor you will receive additional support to get him or her signed on.
  • If your Representative is already a cosponsor you can assist your fellow teammates in reaching that goal.
  • The more people that get involved the sooner lymphedema patients will have coverage for their vital compression supplies!

Additional information and a link to join your team can be found on the State Teams page of our website. 

After joining you will be introduced to the other members of your team via email. If you have any questions please respond to this message. 

As of today we have 144 cosponsors! Join your team and help us reach our goal of 218, which is just over one half of the House of Representatives!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
October 2, 2015: Lymphedema on the Front Page of the Washington Post!
 
 
  • It ran on the front page of the Health and Science section of the 9/29 print edition,
  • spent much of that day as the most read story online,
  • was consequently placed front and center on the homepage of the Washington Post’s website,
  • and was included in their Evening Edition email of the day’s most important stories!

Sharing my family’s experience trying to obtain a diagnosis and treatment for our son gave lymphedema a moment in the national media spotlight, but simply raising awareness isn’t enough. The millions of men, women, and children with lymphedema must have insurance coverage for their vital compression supplies. It is unacceptable that so many Americans are living with a treatable disease and cannot get the care they need. 

We ALL must make our voices heard in order to pass the Lymphedema Treatment Act! The Lymphedema Advocacy Group is working hard to move this bill through Congress, but we can’t reach the finish line without your help. Congress must hear from YOU and one email is not enough. 

Persistence is the key to getting results! If your Rep is not on our cosponsors list please use the easy steps below to continue reaching out and asking for his or her support. 

  • Step #1 – E-mail – template letter provided, just fill in your name and address and personalize the letter if desired.
  • Step #2 – Call – talking points, number to call, and staff member to ask for provided – this step is so important!
  • Step #3 – Use Social Media – links for your Rep’s accounts and sample tweets and Facebook posts provided.
  • Step #4 – Repeat Steps 1-3 As Needed!

You can do this and we are here to help. If you have questions or need advice please reply to this email – we’d love to hear from you!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
September 29, 2015: Article About the LTA and Lymphedema in Today’s Washington Post!
 

The article chronicles my family’s experience with primary lymphedema, and our struggle to obtain a proper diagnosis and treatment for my son Dylan, who, along with his twin brother Devdan, turns nine-years-old today. 
 
Members of the ‪Lymphedema Advocacy Group will be on Capitol Hill this week meeting with offices. It’s so important that Congress hear from you too. Everything you need is on our site, and it’s as easy as 1-2-3!


Also of note, the 18th State of Georgia ‪Lymphedema‬ Education and Awareness Program, sponsored by the Lighthouse Lymphedema Network, is being held on October 24, 2015 in Atlanta, GA. For more information and to register, please visit their website: https://lighthouselymphedema.org/home/.

And for our members who are also affected by lipedema, the Lipedema Project is happy to announce the release of The Disease They Call FAT! The first documentary on lipedema, The Disease They Call FAT is from the lipedema community for the lipedema community. Director/producer Catherine Seo shares the information she wishes she’d had in her own journey for answers about lipedema. Featuring interviews with over 70 doctors, surgeons, researchers, advocates, therapists, and “lipedema ladies” worldwide, this is more than a film – it’s the voice of a movement. People from around the world are raising their voices to bring awareness to lipedema – the need for research, diagnosis, education, and legal recognition. A global community is coming together and beginning to create impact in many ways. Every voice makes a difference. YOUR voice can make the difference. The Disease They Call FAT is available for purchase on DVD, download or online streaming at: https://diseasetheycallfat.tv/filmshop/.

Thank you for your support of the Lymphedema Advocacy Group and the Lymphedema Treatment Act!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
September 17, 2015: Advocacy Training Webinars This Saturday, Updated LTA Info Packet, and Cosponsor Update!
 
Cosponsor Update:
 
Congress is back in session and we are thrilled to report that we have 132 cosponsors! If your Rep’s name isn’t on the list yet please keep writing and calling his or her office, using the forms on our website that make it quick and easy. Hearing from you makes all the difference! 

Advocacy Training Webinars:

To help you sharpen your advocacy skills, we are pleased to be offering encore presentations of the free Advocacy Training Webinars we presented in August, for those who were unable to join us the first time. Both webinars will be repeated this Saturday, September 19th. Details are below my signature and on the Webinars page of our website. 
 
Updated Information Packet:
 
Our Congressional Information Packet, which is meant for sharing with members of Congress and their staff, has recently been updated. The packet can be viewed and downloaded via a link on our About The Bill page. I encourage you to take a moment to review this very informative packet.
Thank you for your continued advocacy and we hope you can join us for Saturday’s webinars!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 

 
September 19, 2015 at 1:00 PM EDT: 
Meet your Representative at Home to Advocate for the LTA 

* Learn to schedule, plan and conduct effective meetings in your local district. 
* Persuade your Representative in person to cosponsor the LTA. 
* Get to know your helpful District Staff. 
* Improve your Advocacy Skills. 

Please register at: https://attendee.gotowebinar.com/register/1804579325873337602.
After registering, you will receive a confirmation email containing information about joining the webinar.

September 19, 2015 at 2:30 PM EDT: 
Form Advocacy Relationships withHealth Legislative Aides (HLAs) in DC to Help Pass the LTA

* Learn how to communicate with the HLA in DC. 
* Understand why the HLA is your “Best Ally.” 
* Spend less time and be a more effective advocate. 
* Persuade more Representatives to cosponsor the LTA. 

Please register at: https://attendee.gotowebinar.com/register/1173720235785905666.
After registering, you will receive a confirmation email containing information about joining the webinar.

If you have any questions about the webinars please contact Elaine Eigeman, our Advocacy Training Chair, at lepatientadvocate@gmail.com.

Thank you!

 
 
September 2, 2015: Important LTA-related news!
 
We have lots of important news and information to share with you this month!

NEW Cost Report Demonstrating Saving 

This new report from Avalere Health, commissioned by the Lymphedema Advocacy Group, estimates the potential saving due to reduced hospitalizations when compression is used in the treatment of lymphedema. This is the first cost-savings estimate of its kind and a powerful new tool to help us gain even more congressional support! Please see the bullet points below my signature, which will help you to better understand this report.

UPDATED Congressional Information Packet

This cost report has been added to our Congressional Information packet, along with our lymphedema infographic and some other new materials. This packet is for sharing with members of Congress and their staff. Please familiarize yourself with the contents of this packet, which can be viewed and downloaded here

NEW Advocacy Training Webinars

In mid-August we launched our first-ever Advocacy Training Webinars. Thank you to all who participated in these two live events! More will follow. Our goal is to host at least one live webinar each month, and make recorded webinars available for view through our website. We’ll keep you posted as we have more dates scheduled and links to view pre-recorded webinars. 

UPDATE on our Cosponsor Status

As we entered into the August recess we had 122 cosponsors. That is an amazing 6.6 cosponsors per week, and 2.4 cosponsors per in-session day, since our bill was introduced on March 26th! We are eager to see that number continue to rise once Congress returns to session on September 8th. Please continue to contact your Representative if he or she is not yet a cosponsor!  All the tools to do so are under the How You Can Help menu on our website 

MORE Tools for Spreading Awareness

In addition to our free information cards, we have available a one-page facts sheet, and our lymphedema infographic in two sizes – 8.5”x11” and a poster-size 18”x24”.  We also have printable table signs if you are attending or hosting an event and want to set up an information table. These items and more can all be ordered and/or downloaded from the Increasing Awareness page of our website. 

NEW CafePress Store for the LTA

Want to show your support for the Lymphedema Treatment Act and help spread awareness at the same time? Why not order a t-shirt or other item from our CafePress store. Twenty percent of the proceeds from all sales are donated to us.

UPCOMING Events:

The World Congress of Lymphology (WCOL) kicks off next week in San Francisco on September 7th.  If you are there, make sure to stop by our booth in the exhibit hall to say hello, and attend our Lymphedema Treatment Act briefing on Wednesday, September 9th from 2:00-3:00. For more information please visit the WCOL website

The Lymphatic Education and Research Network’s walk across the Brooklyn Bridge in New York City takes place on September 19th. For more information please visit LE&RN’s website

Our next Lymphedema Lobby Days will take place in March of 2016! Exact dates cannot be solidified until the 2016 congressional calendar is released. We will let you know as soon as we have more details. You can learn more and hear what participants had to say about our last event on the Lymphedema Lobby Days page of our website. We hope you can join us at this exciting, educational, and inspiring event!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org 

 
COST REPORT INFORMATION & TALKING POINTS:

We first commissioned Avalere Health to produce a cost report (also know as a “score”) for our bill last year.  At that time, they were able to estimate the cost of adding coverage for compression, but lacked sufficient data to estimate the potential savings that would result from improved patient care.

  • The reduced score was made possible by new data showing a 92% reduction in hospital admissions following the utilization of compression items for which the Lymphedema Treatment Act seeks coverage.
  • The revised cost estimate from Avalere Health reduces the original net cost projection by nearly half.
  • In order to produce a highly conservative estimate for the Medicare population at large, Avalere chose to adjust the reported decrease in hospitalization among Medicare patients down by half. Thus, the cost savings from reduced hospitalizations may be twice as much if the full benefit shown in the study were realized. This would essentially negate the entire net cost projection.
  • The score is likely to be reduced even further when accounting for other anticipated expense reductions via improved disease control, e.g. fewer physical and occupational therapy visits, medications, doctor visits, and disability payments.
  • This newly updated and conservative score demonstrates the dramatic benefit of compression, even on a single item of healthcare expenditure!
 
 
August 15, 2015: New Advocacy Training Webinars – sign up now!
 
We are pleased to announce TWO NEW Advocacy Training Webinars from the Lymphedema Advocacy Group (LAG)! We hope you can join us next week, and at future webinars, which we anticipate doing monthly.

Help pass the Lymphedema Treatment Act (LTA). Learn how to: 

• Get a bigger impact from your advocacy efforts.
• Persuade more Representatives in Congress to cosponsor the LTA. 

Please register for ONE or BOTH of these new events:
 
1. How to Meet your Representative and Form an Advocacy Relationship in your Local District office 

Tuesday, Aug 18, 2015 8:00 PM EDT 

• Learn to schedule, plan & conduct effective meetings in your local district. 
• Persuade your Representative in person to cosponsor the LTA. 

Register now at: https://attendee.gotowebinar.com/register/3213118591526207489.
After registering, you will receive a confirmation email containing information about joining the webinar.

2. How to Connect and Form Advocacy Relationships with Health Legislative Aides (HLAs) in DC 

Wednesday, Aug 19, 2015 3:00 PM EDT 

• Get practical “tips” on how successful advocates do it. 
• Learn how to communicate with the HLA, your “Best Ally” in DC. 

Register now at: https://attendee.gotowebinar.com/register/118043936878178818 .
After registering, you will receive a confirmation email containing information about joining the webinar.

Please follow the links above to register, or email Elaine Eigeman, our Advocacy Training Chair, at lepatientadvocate@gmail.com, if you have any questions.
 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
August 4, 2015: Win compression supplies while supporting our work to pass the LTA – enter our summer raffle with just a $5 donation!
 
Our Summer Raffle is Underway!

Each time you donate $5 or more you will be entered to win prizes donated by CircAid (one custom or standard fit item), Jobst ($100 gift certificate), Juzo (one standard fit garment), and mediUSA (one custom or standard fit garment). Visit the Raffle page on our website for details, then donate to enter via our Facebook page

Our Cosponsor Count is Now 121:

That’s an average of more than 6 per week since our bill was introduced, and all thanks to people just like you writing, calling and meeting with their congressional offices! If your Representative isn’t on our cosponsor list yet, there are lots of great tips below on how you can make the most of the congressional recess that began last week and goes through September 7th.

Recess is a Perfect Time to Meet With Your Rep:
Please follow the steps outlined in our Advocacy Handbook to request a meeting with your Representative at his or her closest district office. Don’t delay – you should begin the meeting request process ASAP, ideally before recess begins on July 31st. Each office has their own scheduling process, but in many cases it’s as simple as filling out a request form! Bring a copy of our Congressional Information Packet to your meeting and review it beforehand to prepare. Tips on how to conduct your meeting are included in the Handbook. If you need help scheduling or preparing to talk to your Rep, just respond to this email or contact us any time atinfo@LymphedemaTreatmentAct.org. We’d be happy to set up a call if you’d rather speak by phone.
 
Attend a Town Hall Meeting:
In addition to being a prime time for individual meetings, there are many public events, such as Town Hall Meetings, held during the August recess. These are also great opportunities to ask for support of the LTA. To find out what events your Rep might be hosting in your area, visit his or her website, or call your closest district office. That information can be located here, simply by clicking on your Representative’s name.
 
More Ways To Increase Support For The LTA:
Write and call your Representative using the forms on our website under the How You Can Help menu, and encourage others to do the same. On the Increasing Awareness page of our website you can order free information cards, print our one-page facts sheet and new infographic, use our Tell-A-Friend form, and more. Please also consider sharing a link to our public service announcement.
 
Happy August and thank you for your support of the Lymphedema Treatment Act!
 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 

July 22, 2015: Enter Our Raffle To Win Compression Supplies, Meet With Your Rep During Recess, the WCOL, and More!

We have already surpassed the number of cosponsors we had in the last Congress!
 
Thanks to the grassroots advocacy of people just like you, we now have 111 cosponsors. Now, help us to push on and persuade more members of Congress to support the LTA!
 
ugust Recess – A Perfect Time To Meet With Your Rep:
 
Please follow the steps outlined in our Advocacy Handbook to request a meeting with your Representative at his or her closest district office. Don’t delay – you should begin the meeting request process ASAP, ideally before recess begins on July 31st. Each office has their own scheduling process, but in many cases it’s as simple as filling out a request form! 

Bring a copy of our Congressional Information Packet to your meeting and review it beforehand to prepare. Tips on how to conduct your meeting are included in the Handbook. If you need help scheduling or preparing to talk to your Rep, just respond to this email or contact us any time at info@LymphedemaTreatmentAct.org. We’d be happy to set up a call if you’d rather speak by phone.

Attend a Town Hall Meeting:
 
In addition to being a prime time for individual meetings, there are many public events, such as Town Hall Meetings, held during the August recess. These are also great opportunities to ask for support of the LTA. To find out what events your Rep might be hosting in your area, visit his or her website, or call your closest district office. That information can be located here, simply by clicking on your Representative’s name.
 
World Congress of Lymphology:
 
The 2015 World Congress of Lymphology (WCOL) is taking place in San Francisco and is fast approaching. The Scientific Program runs September 7th-11th (open only to clinicians and researchers), and the Patient Summit from September 8th-9th. Discounted registration ends July 30th. If you are interested in attending please visit the WCOL website for details.
 
More Ways To Increase Support For The LTA:
 
Write and call your Representative using the forms on our website under the How You Can Help menu, and encourage others to do the same. On the Increasing Awareness page of our website you can order free information cards, print our one-page facts sheet and new infographic, use our Tell-A-Friend form, and more. Please also consider sharing a link to our public service announcement.
 
August Raffle:
 
To celebrate our new partnership with GoodWorld, a social media giving tool, we will be raffling off one prize each week, during the month of August. Each time you donate $5 or more you will be entered to win prizes donated by CircAid, Jobst, Juzo, and mediUSA. Visit the raffle page on our website for details, then watch for posts on our Facebook page.
 
I hope you are enjoying summer and thank you 
for your support of the Lymphedema Treatment Act!
 
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
 
 
July 1, 2015: 102 Cosponsors and counting – use our new Phone Action Alert to call your Rep!
 
The Lymphedema Treatment Act is off to a strong start this session with 102 members of the House already signed on. All of these cosponsors were the result of constituent contact, from people just like you!

Cosponsors are one of the key factors in deciding which bills are moved forward in the legislative process and passed into law. Continuing to increase our cosponsor count is very important, and your help is critical.

Constituent contact is what matters most. Your Representative’s office needs to hear from you, possibly multiple times, so don’t be daunted if you receive a noncommittal form letter reply at first. Persistence makes the difference, and calling after emailing is especially important.

Our new Phone Action Alert will provide you with the number to call, person to ask for, and talking points. Click here to send an email letter if you haven’t already done so, and here to make your phone call.

Your voice makes the difference, please take action today!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
May 25, 2015: Lymphedema featured at NORD Annual Gala
 
Last week, Primary Lymphedema was one of 10 rare diseases highlighted at the National Organization of Rare Diseases’ annual gala in Washington, DC!

Each year NORD honors 10 rare disease patients from around the country. Sophia Hanson, daughter of Lymphedema Advocacy Group board member Julie Hanson, was among this year’s Portraits of Courage honorees. You can read more about Sophia on NORD’s blog.

The day following the gala, the Hanson family, along with other board members and advocates, met with congressional offices about the Lymphedema Treatment Act. We now have 82 cosponsors, but still need many more!

If your Rep isn’t a cosponsor yet don’t give up, or settle for a form letter response! Persistence is key and will pay off. Keep writing and calling, and getting as many others as you can to do the same. You’ll finds lots of tips and guidance in our Advocacy Handbook.

And remember that we are happy to provide you with free information cards to help you spread awareness and inspire others to take action. A link to order your cards can be found on the Increasing Awareness page of our website.

Happy Memorial Day and I hope your summer is off to a wonderful start!

Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org

 
 
May 2, 2015: We’ve got 62 cosponsors already!
 
It’s been less than six week since our bill was reintroduced and we already have 62 cosponsors! That’s amazing progress, but we still need many more. If you’ve received a form letter response don’t be satisfied with that!
 
Next week Congress is on recess, but that makes it a great time to send emails and tweets, and make Facebook posts and phone calls. Congressional staff are still working and often less busy during recess weeks. 
 
All the tools you need are on our website under the “How You Can Help” menu, plus there’s lots of great tips and talking points in our Advocacy Handbookincluding what to do after receiving a form letter. Need help or advice? Don’t hesitate to ask, we’d love to hear from you!
 
We are thrilled with all of the positive feedback about the video! 
 
We are so glad that everyone, whether they know a lot about lymphedema and the LTA or virtually nothing at all, are finding it informative and inspirational.
 
If you haven’t watched it yet I hope you will soon, then share it with everyone 
 
Thank you for your continued efforts. Together, we can pass the Lymphedema Treatment Act!
 
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
 
 
April 28, 2015: Watch and share this new documentary about the LTA!
 
It is with great pleasure that I present to you this new 13-minute documentary – Lymphedema Treatment Act Public Service Announcement.Please share it far and wide to help us increase awareness about lymphedema and support for the LTA! 
 
I was extremely honored when Catherine Seo approached me with the idea for this film. My heartfelt thanks to her and Dr. Mark Smith, Director of The Friedman Center for Lymphedema Research & Treatment, for making this a reality, and to the many others who took part in the filming and production.

We hope that this public service announcement will inspire viewers to take action and make their voices heard!

As of today we have 45 cosponsors. That’s an amazing number considering our bill was introduced only one month and three days ago! If your Rep isn’t a cosponsor yet YOU have the power to change that. Use the advocacy tools on our website under the “How You Can Help” menu and follow the advice in our Advocacy Handbook

Be persistent and you will get results! Don’t hesitate to contact us if you have any questions or need assistance. We are here to help and would love to hear from you. Thank you in advance for sharing this film with everyone you know. 

Together, we can pass the Lymphedema Treatment Act!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 
April 24, 2015: It’s Facebook Friday for the LTA – Let’s Get Posting!
 
If you are a Facebook user please post a message on your Representative’s Facebook page today asking him or her to cosponsor the LTA!
 
Click here to find your Rep’s Facebook page and a sample post.When you’re done, please ask your Facebook friends to do the same.
 
If your Rep is already a cosponsor then you can send a thank you message. 
Click here to see the current cosponsor list
. Thanks for participating in our first Social Media Action Week!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 
 
April 21, 2015: It’s Twitter Tuesday for the LTA – Let’s Get Tweeting!
 
If you are a Twitter user please tweet your Representative today to ask him or her to cosponsor the LTA!
 
Click here to find your Rep’s Twitter handle and a sample tweet.When you’re done, please ask your followers to do the same.
 
If your Rep is already a cosponsor then you can send a thank you message. 
Click here to see the current cosponsor list
. Thanks for participating in our first Social Media Action Week!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

April 15, 2015: Announcing our first batch of cosponsors!

We have 31 cosponsors already!   

Right after our bill was reintroduced Congress went on recess. They’ve just returned, allowing the first batch of cosponsors to be added. Click here to see if your Representative is among the first to sign on.

If your Representative’s name is not on the list, and you haven’t written his or her office since our bill was reintroduced on March 25th, please do so today. It only takes a couple of minutes to use our contact form.  

Next week we will be launching our first ever Social Media Action Week!

On 4/21 we will have “Twitter Tuesday” and that morning we will email you everything you need to tweet your Rep about supporting the LTA. On 4/24 we’ll have “Facebook Friday” and do the same.

If you don’t yet have accounts on these platforms, and want to participate, you can do so here: join Twitterjoin Facebook. While there, please follow us on Twitter and like our Facebook page. Thanks for your continued support and we’ll see you on Twitter and Facebook next week!

Sincerely,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 
 
April 1, 2015: Upcoming Events & Writing Your Rep
 
Last week, on 3/25/15, the Lymphedema Treatment Act was reintroduced. If you haven’t written your Representative since that date please do so today! It only takes a couple of minutes to use the contact form on our website.
 
Cosponors do not carry over from one Congress to the next, so we need everyone to contact their Representative, even if he or she was a cosponsor in the previous Congress. Click here to send your email letter now.
 
And for anyone who might want a fun refresher on the legislative process, here is a link to an old favorite from Schoolhouse Rock, “I’m Just A Bill.” 

In other news, the following are several upcoming events we thought you would want to know about:

  • The World Congress of Lymphology (WCOL) will take place in San Francisco, CA September 7th-11th, with a Patient Summit September 8th-9th. Early bird discounted registration for the Patient Summit ends April 15th, and scholarships are available, so don’t delay. 

Thank you for your continued support and I hope your spring season is off to a lovely start!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 
 
March 26, 2015: The LTA has been reintroduced – Write Your Rep Now!
 
I’m thrilled to inform you that yesterday, on March 25th, the Lymphedema Treatment Act was reintroduced by Rep Dave Reichert (WA), with co-leads Leonard Lance (NJ), Earl Blumenauer (OR), and Janice Schakowsky (IL). Our new bill number is HR 1608.

Please write your Representative today using the contact form on our website – it only takes a couple of minutes! 

Even if your Rep was a cosponsor last year, you will need to contact him or her again because cosponsors do not carry over from one Congress to the next. An editable template letter is provided, and I encourage you to add a few personal sentences explaining why this issue is so important to you. 

After you send your letter you will be redirected to a Tell-A-Friend form. Please encourage everyone you know to also send a letter. Additional tools for helping to spread awareness can be found on our Increasing Awareness page.

Act Now to Pass the LTA!

Thanks for your support,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 
 
March 6, 2015: There is much to celebrate on this 2015 Awareness Day!
 
When I learned my baby had an incurable disease that I had never heard of and most doctors knew little about, and that his treatment supplies weren’t even going to be covered by insurance, I was distraught, as you can imagine. But today, just eight years later, I am hopeful about the progress being made.

These changes can’t come fast enough, but real strides are being made in awareness, education, research, and insurance coverage. Today, on Lymphedema Awareness Day, I hope we can all celebrate just how far we’ve come, and resolve to stand up, speak out, and meet the challenges still ahead of us.

Our walkathon wrapped up last weekend and was a huge success! We deeply appreciate the many individual donations we received. We are incredibly grateful for the additional generous support from JobstJoViPakJuzoLohmann & Rauscher,LympheDIVAsmedi, and Solaris. And we would also like to thank Jobst, Juzo, Lohmann & Rauscher, and Solaris, for their 2016 pledges.

We are now over 90% of the way to reaching our total fundraising goal for this year, so if you meant to contribute but just hadn’t had a chance, you can still do so via PayPal, or by mailing a check to: Lymphedema Advocacy Group, PO Box 1682, Carrboro, NC 27510.

Lastly, we want to make sure you are aware of two unique upcoming opportunities:

The 1st International Symposium on Lipedema will be held in New York City on April 17th and 18th. Details and registration information can be found here. At the Friday night reception two films will be premiered – one about Lipedema and another mini-documentary about the Lymphedema Treatment Act.

The 25th World Congress of Lymphology will be taking place in San Francisco, September 7th-11th, with a two-day patient summit on September 8th and 9th. For general information click here, and for the patient summit click here 

I hope you can take the opportunity to do something nice for yourself today – 
Happy Lymphedema Awareness Day!
 
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
 
 
February 26, 2015: Our 600 mile walk for the LTA is almost done! Have you donated yet?

The Lymphedema Advocacy Group board member team is nearing the end of their 600 mile walk fundraiser for the LTA! We are down to the last few miles and by Saturday evening we will cross our virtual finish line.

 
If you have not had the chance but still wish to donate to our walkathon, please help us rally over the finish line by donating here. If you prefer to donate via check the address is: Lymphedema Advocacy Group, PO Box 1682, Carrboro, NC 27510

We are so grateful for the support we’ve received so far – a special thank you to all who have already given generously! 

Together, we can pass the Lymphedema Treatment Act!
Thank you for your support,
 
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
 
 
February 21, 2015: Lymphedema featured again on The Doctors, LTA Walkathon is 3/4 to fundraising goal!
 
The 19 board members of the Lymphedema Advocacy Group are proud to announce that today marks the halfway point of our Act Now for the LTA Walkathon Fundraiser– 300 miles down and 300 miles to go! 

We are so excited about the momentum in the lymphedema community these days! Check out LE&RN spokeswoman Kathy Bates on the television show The Doctorsas she talks about her struggle with lymphedema. Awareness is growing and now it’s time to get the LTA across the finish line!

Last year we made tremendous progress by gaining 107 bipartisan cosponsors. This Congress, we are poised to go even further. Your support will enable us to combine forces with professionals in DC and take our grassroots advocacy to a whole new level!

Each of our board members has made a personal donation and pledged to walk a combined total of over 600 miles in two weeks. We ‘hit the road’ back on Valentines day and will cross the finish line on February 28th. If you have already donated, then we thank you from the bottom of our hearts. If not, here’s your chance! 

 
If you prefer to donate via check the address is: Lymphedema Advocacy Group, PO Box 1682, Carrboro, NC 27510
 
Together, we can pass the Lymphedema Treatment Act!
 
Thank you for your support,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
 
 
 
February 14, 2015: Show Your Love for the LTA!
 
Today is the big kick off of our Act Now for the LTA walkathon fundraiser!
Every single one of our 19 board members has made a personal donation and
pledged to walk a combined total of over 600 miles during the next two weeks. 

We are passionate about helping lymphedema patients and doing everything we can 
to get this bill passed – hopefully in this Congress! For that reason, the Lymphedema Advocacy Group is raising funds that will enable us to hire government affairs experts.

Last year we made tremendous progress by gaining over 100 bipartisan 
cosponsors. This Congress we are poised to go even further. Your support 
will enable us to combine forces with professionals in DC and take our 
grassroots advocacy to a whole new level! 

 
Together, we can pass the Lymphedema Treatment Act!
Thank you for your support,
 
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

February 10, 2015: Act Now! Support our 600 mile walk for the LTA!

The board members of the Lymphedema Advocacy Group are proud to announce that we have pledged to walk over 600 miles from February 14-28th as part of a fundraiser for the Lymphedema Treatment Act.
 
Please Visit our Act Now for the LTA Walkathon Website!
 
Our bill will soon be re-introduced into this Congress and we have high hopes for its passage in the next two years, especially if we are able to obtain professional government affairs assistance. This way our all-volunteer, grassroots organization will have “boots on the ground” in DC working in concert with us to pass this critical legislation! 

Please donate if you can and share our link via Facebook, Email, Twitter, Instagram — whatever media floats your boat. 

Together, we can pass the Lymphedema Treatment Act!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
 
 
 
February 1, 2015: Free Information Cards Available

While we wait for the Lymphedema Treatment Act to be reintroduced into the current Congress, this is a great time for you to help us spread awareness. I hope you will order some of our free information cards to distribute in your area. Click here to place your order

If you use social media please join uson TwitterFacebook, and on our new LinkedIn page.

To date we have advocacy teams started in 48 states – have you joined yours? If not, details and a link to sign up can be found on the State Teams page of our website. Team members will work together to get all Representatives in their state to cosponsor the bill once it is reintroduced. 

We’ll soon be kicking off our Act Now for the LTA campaign. Details will be coming soon!
 
Thanks for your continued support,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

January 1, 2015: Happy New Year & Thank You For A Great 2014!

Thank you for all of your efforts this past year. We finished with an impressive 107 cosponsors – the most support our bill has ever garnered during a cycle of Congress! The tremendous progress we made in 2014 confirms how important your voice is, and the power each of us has to make a difference. 

I would also like to thank our sponsors, whose generous support sustains our efforts: mediUSASolarisJoViPakJuzoJobstLympheDIVA’sFarrowMedSigvarisImpediMedLohmann & RauscherBandages PlusLuna MedicalAcademy of Lymphatic StudiesLymphedema ProductsSunMED, and Solidea.

It was exactly 8 years ago on New Years Day 2007 that my son Dylan was diagnosed with lymphedema, bringing an end to three agonizing months of not knowing what the mysterious swelling was that had been worsening since birth. At that point I thought the hardest part was over. A few months later, when he was prescribed his first compression garment, I would learn that the real battle was just beginning. 

I made a promise then that I would not let my child inherit this mess. It was enough for him to have to live with this disease. He should not have to fight for insurance coverage for his medical supplies on top of that. No lymphedema patient should. 

I look forward to furthering our progress in 2015 and keeping that promise! Together, we can ensure that someday patients will no longer suffer needlessly due to lack of insurance coverage for their essential compression supplies. 

On behalf of the entire Lymphedema Advocacy Group Board of Directors, I wish you and your loved ones a happy and healthy new year!

Sincerely,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

December 1, 2014: We now have more than 100 cosponsors!

For the first time in any Congress, our bill has garnered more than 100 cosponsors!  To see the complete list 
click here, nearly 90% of which will be serving in the next Congress. Below my signature you can find the names of those who will not be returning to office next year.

We are excited to build on the tremendous progress we have made this year, and your support will help make that possible. Our all-volunteer, grassroots organization puts every dollar we receive to work, raising awareness about lymphedema and building support for the Lymphedema Treatment Act, so that one day patients will have better 
access to treatment, including insurance coverage for their essential compression supplies.

Highlights of our accomplishments during 2014 include:

  • Reintroduction of the Lymphedema Treatment Act by an ideally positioned bipartisan sponsorship team.
  • Commissioning of Avalere Health to produce a cost estimate for implementing this coverage, thus enabling 
    us to answer long-standing questions from numerous House and Senate offices and broaden our support.
  • Execution of an incredibly successful Lymphedema Lobby Days in Washington, DC, which brought together 
    85 advocates from 23 states to meet with over 150 congressional offices, and resulted in dozens of new cosponsors for our bill.
  • Enabling individuals to send nearly 10,000 messages to Congress during 2014 alone, by using the submission 
    form on our website.
  • And the garnering of over 100 cosponsors in total, more than in any past Congress!

If you are able to include the Lymphedema Advocacy Group in your holiday giving we would be incredibly grateful. Secure donations can be make quickly and easily through PayPal, or by mailing a check to: 
The Lymphedema Advocacy Group, PO Box 1682, Carrboro, NC 27510.

Thank you for everything you have done to bring us this far, and I look forward to continuing our work in 2015. 
I hope you and your loved ones had a wonderful Thanksgiving, and that your entire holiday season is filled with 
love, happiness and health! 

With gratitude,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

Cosponsors of our bill who were not reelected or who did not run for reelection are listed below, 
with the individual who will be taking their place in parentheses: 

Bruce Braley D-IA (Joni Ernst – R) 
Howard Coble R-NC (Mark Walker – R) 
Tom Latham R-IA (Rod Blum – R) 
Rush Holt D-NJ (Donald Norcross – D) 
Michele Bachmann R-MN (Tim Walz – D) 
Doc Hastings R-WA (Dan Newhouse – R) 
Carolyn McCarthy D-NY (Kathleen Rice – D) 
Michael Michaud D-ME (Bruce Poliquin – R) 
Tim Bishop D-NY (Lee Zeldin – R) 
Jim Gerlach R-PA (Robert Brady – D) 
James Moran D-VA (Rob Whittman – R) 
Pete Gallego D-TX (Will Hurd – R) 
Lee Terry R-NE (Brad Ashford – D)

 

November 1, 2014: Lymphedema on the show The Doctors, seeking Board Applicants, and more!

The Lymphedema Advocacy Group is seeking applicants interested in serving on our Board of Directors for the upcoming term beginning in January of 2015. In particular, we are looking for a Board Secretary and Fundraising Chair (experience preferred).  Other desired areas of expertise/experience are listed below my signature. If interested, please respond to this email, or contact us at info@LymphedemaTreatmentAct.org, to obtain an application.

On October 14th, Ohio State Team member Sarah Bramblette was featured on the show The Doctors. She talked about her experience living with lymphedema and lipedema, and why she is working to pass the Lymphedema Treatment Act. Click here to watch the segment. Our thanks go out to Sarah for her incredible advocacy!

Are you a member of your State Team? If not, please consider joining today! More information and a link to sign-up is available here. To date, we have teams started in 48 states. No experience is required and the time commitment is variable dependent on your interest and availability.

Please be sure to vote on November 4th if you haven’t already, and thanks for your continued support of the Lymphedema Treatment Act!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 
 
Lymphedema Advocacy Group 
Prospective Board Applicant Information
 
The Lymphedema Advocacy Group is an all-volunteer organization with a working board. We are seeking Board members with skills such as, but not limited to, the following:

• Legislative or lobbying experience
• Patient advocacy 
• Non-profit experience
• Public relations

• Social Media
• Fundraising
• Data entry and management
• Website maintenance
• Graphic design
• Writing and secretarial tasks
• Public speaking, preparing presentations
• Medical or scientific expertise in the field of lymphedema

Essential Board Member Qualities:

• The desire to be an effective ambassador for the lymphedema community, knowledgeably raising awareness about lymphedema and advocating for the Lymphedema Treatment Act. The ability to actively participate as a self-directed team member in support of the Lymphedema Advocacy Group’s mission and goals.
• The willingness to learn how to effectively advocate, in a bipartisan manner, for legislative changes, if not already skilled in this area.
• The belief that improving the lives of patients who suffer from lymphedema overrides any financial or business interest due to affiliation with a lymphedema-related industry or service. 

Core Board Member Responsibilities:

• Participate in Board meetings (held each odd numbered month) by way of conference call. 
• Secure the co-sponsorship of your Representative (and Senators once the bill is introduced in that chamber), and if unable to do so obtain a reason why that member of Congress was unwilling, and share that information with the board so that that we can develop effective strategies for countering such reasons. 
• Actively work to spread awareness, engage others, participate in your State Team, and secure cosponsors in addition to your own member(s) of Congress.
• Assist in organizing and executing, and whenever possible participating in, lobby trips to Washington, DC.
• The Lymphedema Advocacy Group has no paid staff, and is therefore a working board. Each member shall be responsible for at least one task essential to the functioning of the organization (i.e. hold an Officer position, serve on a committee, or execute a specific duty) in addition to the general responsibilities listed above. 

 

October 1, 2014: October Lymphedema Events and Cosponsor Count

I’m pleased to share with you information about the following events taking place in October. Remember that a listing of upcoming lymphedema-related events, and a lot of other information, is always available on our Resources page.
October 14 ~ Charlotte/Concord, NC
Charity Golf Tournament to benefit us – the Lymphedema Advocacy Group!
Click here for the invitation, and here for the application to attend or donate.
Even if you can’t participate, please consider making a tax deductible donation.

October 16, 2014 ~ free, online symposium 
Manual Lymphatic Drainage and Exercise to Ease the Symptoms of Lymphedema
Sponsored by the Lymphatic Education & Research Network

October 24-25, 2014 ~ Atlanta, GA 
Lighthouse Lymphedema Network Education and Awareness Program &
American Lymphedema Framework Project’s Stakeholders Meeting

The Lobby Days page of our website has now been updated to include a photo of this year’s participants and what they had to say about their experience. When Congress headed into recess on September 19th we had already gained 21 cosponsors as a direct result of our days on the Hill, bringing our count to 91! You can view the list of cosponsor here.

If your Representative is not yet a cosponsor this is a perfect time for you to persuade him or her. Please request a meeting at your Representative’s district office while he or she is home campaigning during October and early November!

Talking points and FAQ’s are available on this concise two-page document. The number to your Representative’s office can be located here, and be sure to print and take this Congressional Information Packet with you. 

Thank you for your continued support!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

September 16, 2014: Recap of last week’s Lymphedema Lobby Days
Our trip to Washington, DC was amazing!

The Lymphedema Advocacy Group’s 2014 Lymphedema Lobby Days took place on September 8th and 9th.  Eighty-five patient advocates participated from the following 24 states, plus the District of Columbia: AZ, CA, FL, GA, IA, IL, KS, KY, MA, MD, MI, MO, NC, NJ, NV, OH, PA, SC, TN, TX, UT, VA, WA and WI.

To educate Congress about lymphedema and raise support for the Lymphedema Treatment Act, our advocates met with approximately 150 individual offices over the course of two days. These meetings had been scheduled in advance, and included both Senate offices for each participating state, plus all or some of the House offices from those states. 

Participants also delivered information to all Senate and nearly all House offices with which we did not have a scheduled meeting. At these “drop-ins” our advocates were sometimes lucky to be granted an impromptu meeting, which are not included in the meeting total above. It’s incredible to think that we reached almost all 535 congressional offices on this, our biggest and best trip to date! 

One of the highlights of our two days on the Hill was our Congressional Briefing on Tuesday the 9th.  All of our nearly 40 participating patients, ranging in age from nine to 71, took part in the briefing to represent the “face of lymphedema.” The briefing was video taped, and once we have it edited we will share it with all of you, as well as with congressional offices that were unable to attend. 

As of this writing, it is exactly one week since the close of our 2014 Lymphedema Lobby Days and we have already gained an additional 13 cosponsors as a direct result of our visit to DC! I’m sure there will be even more to come, as offices continue to deliberate over information they have received. (You can see the current list of House cosponsorshere.) 

We were delighted with the level of interest from Senate offices too. Our bill has not yet been introduced in the Senate, and we are in continuing communication with several of the offices we met with regarding their interest in introducing our bill. This is a process that will take some time, but our goal is to have active bills in both the House and Senate during the next Congress, which begins January 2015.

This trip really underscored the importance of direct communication from constituents. I cannot stress enough how important personal communication from you is! Please call your members of Congress at your earliest convenience, to help us build on the momentum we have gained from this trip. Better yet, ask for a meeting at their district office while they are home campaigning during the month of October!

Talking points and FAQ’s are available on this concise two-page document – click here. The number to your Representative’s office can be located here, and to your Senators’ offices here. If attending a meeting be sure to print and take them this Congressional Information Packet

I would like to thank our Lobby Days sponsors, whose support made this trip possible. Our gratitude goes out to: Solaris, medi and Jobst (Gold Sponsors); JoViPak and Juzo (Silver Sponsors); and ImpediMed, Luna Medical and the Lighthouse Lymphedema Network (Bronze Sponsors).

And most of all, I would like to thank our patient advocates who participated in this year’s Lymphedema Lobby Days – they did a tremendous job! In the coming weeks I will be posting quotes and photos from them on the Lobby Days page of our website. Some can already be found on our Facebook page.

We hope even more of you will be able to join us on our next trip. But right now, remember that you can make a difference by contacting your Congressional offices, and building on the foundation we have laid. Please call them today and tell them how important to you the Lymphedema Treatment Act is!

Thank you for your continued support,

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

September 8, 2014: The Congressional Briefing about Lymphedema and the LTA is tomorrow – call your members of Congress today!
The Congressional Briefing about lymphedema and the Lymphedema Treatment Act is tomorrow! 
If you haven’t already done so, using the links below, please call your members of Congress at their DC 
offices and make sure they plan to attend. 
Detailed information about the Congressional Briefing can be seen in this invitation. Please share this information with your congressional offices when you call, and explain to them why it is so important to you that they be present at tomorrow’s briefing.
You can help us to educate members of Congress about lymphedema and why they should support and pass the Lymphedema Treatment Act by calling your members of Congress today!
And we hope you enjoyed our new 5 minute video to help raise awareness about lymphedema and the Lymphedema Treatment Act! After you watch the video on YouTube, please share it with others to help spread the word –https://www.youtube.com/watch?v=npYqXBz2YvE&feature=youtu.be
Thank you for your support!
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
September 2, 2014: New Video to Spread Awareness about Lymphedema and the LTA!
We are proud to share with you a new 5 minute video to help raise awareness about lymphedema and the Lymphedema Treatment Act!
Click here to view the video on YouTube, then please share it with others to help spread the word.
 
And remember, a Congressional Briefing about lymphedema and the Lymphedema Treatment Act will be held in one week, on September 9th.  We need you to do everything you can to make sure your members of Congress attend this briefing!
I hope you have already written your members of Congress about the briefing. Now, please make a follow-up phone call to their DC offices this week, to make sure they plan to attend. You can quickly and easily look up the number to your Representative’s office here, and your Senators’ offices here.
Detailed information about the Congressional Briefing can be seen in this invitation. Please share these details with your congressional offices when you call, and explain to them why it is so important to you that they be present at this briefing.
You can help us to educate members of Congress about lymphedema and why they should support and pass the Lymphedema Treatment Act by calling your members of Congress this week!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

August 16, 2014: A Congressional Briefing for our bill will be held in two weeks! Have you contacted your members of Congress to ask them to attend?
A Congressional Briefing about lymphedema and the Lymphedema Treatment Act will be held on 
September 9th.  We need YOU to urge your House and Senate offices to attend. If you haven’t contacted 
your members of Congress since we first sent this announcement one week ago, please do so today!

Click here to send your message. A template letter inviting them to this briefing is provided; 
all you need to do is complete your name and address.

Please help us to ensure that your congressional offices attend this briefing to learn more about lymphedema 
and why they should support and pass the Lymphedema Treatment Act.

Contact your members of Congress today! 

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

August 19, 2014: A Congressional Briefing for our bill will be held on 9/9 – contact your members of Congress now!
A Congressional Briefing about lymphedema and the Lymphedema Treatment Act will be held on 
September 9th.  Please contact your members of Congress, urging them to attend this briefing!

Click here to send your message. A template letter inviting them to this briefing is provided; 
all you need to do is complete your name and address.

Even if you have written recently, or if your Representative is already a cosponsor, 
these offices need to hear from you again right now.

Please help us to ensure that your congressional offices attend this briefing to learn more about lymphedema 
and why they should support and pass the Lymphedema Treatment Act.

Contact your members of Congress today! 

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

August 1, 2014: Making the Most of the August Recess
The August recess is a prime opportunity for you to meet with your Representative in person, share a bit about lymphedema, and urge him or her to cosponsor the Lymphedema Treatment Act!
Please check your Representative’s website for Town Hall events in your area, or call his or her office to ask. If you prefer a personal meeting, please contact your nearest district office ASAP to get one scheduled. You can look up your Representative’s website and district office information here.

If you are unable to attend an in-person event or meeting, please call your Rep’s DC office and speak to the Health Aide about the bill.  Congress is on recess, but staff isn’t. Detailed information and advice for making this phone call is in ourAdvocacy Handbook

As of right now we have 70 cosponsors. Click here to view the list. New cosponsors cannot be officially added to the bill until Congress resumes, but we can push to get some lined up and waiting!

Our Lymphedema Lobby Days will take place as soon as Congress comes back in session – September 7th-9th.  The final day to register is August 7th. Please see the Lobby Days page of our website for complete information. 

I hope you are enjoying your summer, and thank you for your continued support of the Lymphedema Treatment Act!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

July 5, 2014: Final weeks to register for Lymphedema Lobby Days!

Our 2014 Lymphedema Lobby Days will be taking place September 7th-9th in Washington, DC. 
We’d love for you to join us – no experience is necessary and everyone is welcome! 

Participants will educate Congress and members of their staff about lymphedema and the importance of 
access to proper treatment, while raising support for the Lymphedema Treatment Act.

Complete information and a link to register can be found on the Lobby Days page of our website. 
The registration deadline is August 7th, so don’t delay. We hope to see you there!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

June 28, 2014: We now have advocacy teams in 47 states!

Last year we undertook an effort to begin building a grassroots team of advocates in every state. I’m proud to tell you that today we have teams in 47 states! However, we still need a lot more team members to reach our goal of having all 435 congressional districts represented. 

I’m writing to encourage you to join your state’s team, if you haven’t already. No experience is required, and the time commitment is variable based on your interest and availability. Complete information and a link to join can be found on the State Teams page of our website.

Thank you in advance for doing what you can to raise awareness about lymphedema and support for the Lymphedema Treatment Act! And don’t forget that we are happy to send you free information cards to distribute in your area. Just click here to place your order.

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

June 20, 2014: Cosponsors, Endorsements, Lobby Days & More!
Lobby Days:
Our Lobby Days are fast approaching! If you haven’t signed up yet, we’d love for you to join us September 7th – 9th in Washington, DC. So far we have 42 registered participants from 18 different states. Complete information is on the Lobby Days page of our website.
Cosponsor Count:
The LTA has 60 cosponsors to date. Click here to see if your Representative is among them. If he or she is not yet a cosponsor, please use the step-by-step advice in our Advocacy Handbook to make it happen.
New Endorsements:
We are proud to announce two new Endorsements – The National Patient Advocate Foundation and the Wound, Ostomy and Continence Nurses Society.
Facebook | Twitter | Tell-A-Friend:
Please “like” our Facebook page, follow us on Twitter, and spread the word by using our Tell-A-Friend form. 
We can’t do this without you – thanks for your continued support!
_____________________________
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

June 1, 2014: A big Endorsement for the LTA!

The LTA was recently endorsed by the American Academy of Physical Medicine and Rehabilitation!
This is an important milestone for us because it is the first physicians group to join our list of supporting organizations.

Several changes and additions have been made to our website:

  • The Lymphedema Advocacy Group has gained four new board members this year, whose bios can be read on the About Us page.
  • Our Resources page, where you can find a listing of lymphedema events, links to provider directories, and much more, has moved to a new location.
  • And we now have a page dedicated to our new Advocacy Handbook, which has step-by-step instructions and advice on how to secure your own Representative as one of our cosponsors. It’s easier to do than you might imagine!

We need help spreading the word, and will gladly send you free information cards to distribute in your area.
You can place your order now by clicking here, or in the future by following the link on our Raising Awareness page.

And we’d love for you to join us in Washington, DC at our 2014 Lymphedema Lobby Days, September 7th-9th.No experience is necessary and everyone is welcome. The more participants we have, the more offices we can visit, and the more support we can raise for the LTA! Complete information is available on the Lobby Days page of our website. We are just a bit more than three months out, so please don’t delay in registering if you plan to join us. 

Thank you for your continued support!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

May 26, 2014: Louisiana passed a lymphedema mandate!
Last week Louisiana passed a state lymphedema treatment mandate!
Like the North Carolina and Virginia mandates already in effect, this law will require that all private insurance policies sold in that state cover compression supplies. The Louisiana bill was passed unanimously by both its state House and Senate, and now all that remains is for the bill to be signed into law by the Governor. I’ll be in touch with more details when that occurs.
How did this happen? It’s all thanks to one amazing advocate on our Louisiana State Team
She made change happen and so can you!
We need your help to pass the Lymphedema Treatment Act so that patients everywhere, including Medicare beneficiaries who can’t be helped by state mandates, have coverage for their compression supplies. If your Representative is not yet amongst our cosponsors, please continue to contact his or her office.

I urge you to call your Rep’s DC office, this week, and speak to the Health Aide. When you do, ask for his or her direct email address so that you can send this information about the bill. A link to look up the phone number, as well as lots of helpful tips on what to say and what questions to expect, can be found in our Advocacy Handbook.

I can’t stress enough the importance of you making this phone call. Personal contact is the key. We need your Rep as a cosponsor and you have the power to make that happen. 

Thank you in advance and Happy Memorial Day!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

May 4, 2014: New Advocacy Handbook
Over the last couple of months we’ve talked a lot about how to get your Representative to cosponsor our bill. Do not be frustrated if he or she is not yet amongst our 34 cosponsors. Persistence is the key.

Writing your Representative’s office through the submission form on our website is just the first step. You’ll likely receive a noncommittal form letter in response and you must not stop there. We’ve included detailed instructions for what to do next, as well as lots of other helpful advice, in our new Advocacy Handbook .

To give you an understanding of the information it contains, the table of contents is below my signature. If we each take responsibility for getting just our own Representative to cosponsor the bill it will make an enormous difference!

Thank you so much,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group


Advocacy Handbook ~ Table of Contents:

Introduction

I. About The Lymphedema Advocacy Group 
II. How To Use This Handbook 

How To Get Your Members Of Congress To Cosponsor The Lymphedema Treatment Act

III. Step 1 – Write your Members of Congress 
IV. Step 2 – Call your Members of Congress 
V. Step 3 – Meet with your Members of Congress 

Other Ways To Help

VI. Raising Awareness 
VII. State Advocacy Teams 
VIII. Lymphedema Lobby Days in Washington DC 

Our Advocacy Handbook can be viewed and downloaded from this page of our website:
http://lymphedematreatmentact.org/advocacy-handbook/

 

April 24, 2014: Powerful Ways You Can Help!

Our cosponsor count now stands at 28. Click here to see if your Rep’s name is on the list yet. To help us gain more cosponsors, please consider becoming part of your state’s team.

We hope you can to join us for Lymphedema Lobby Days, Sept 7th-9th. More than half of the rooms held in our group block are already gone, so sign up soon. Complete information, as well as links to register and book your room, are available on the Lobby Days page of our website.

If you are unable to come to DC yourself, but want to support our Lobby Days, 
please consider making a donation!
Your much-needed contribution will help us to provide attendees with all of the materials they need, print critically important leave-behind information for every congressional office, conduct a staff briefing to supplement our individual office meetings, and host an orientation reception on arrival night, to prepare and train our patient advocates for the days ahead on the Hill. 

You can make a secure donation by credit/debit card via PayPal, or by mailing a check to: 
The Lymphedema Advocacy Group, PO Box 1682, Carrboro, NC 27510.

Individuals, small businesses, clinics and non-profits donating $250 or more will have the option of being listed as a supporter of our 2014 Lobby Days on the corresponding page of our website. 

In closing, I am deeply honored to have recently been awarded the Wendy Chaite Leadership Award by the Lymphatic Education and Research Network (LE&RN). You can read the press release here. My heartfelt thanks to LE&RN and to all those who nominated me! 

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
info@LymphedemaTreatmentAct.org
www.LymphedemaTreatmentAct.org

 

April 4, 2014: 2014 Lymphedema Events

We are pleased to share with you information about the following lymphedema events occurring throughout 2014. For future reference, a listing of upcoming events, as well as a plethora of other information, is always available to you on the Patient Resources page of our website.
April 17th    
Microsurgical Treatment of Lymphedema & New Clues to Understanding Lymphatic Disorders in Children
Hosted by the Lymphatic Education & Research Network as part of an ongoing series of free online symposiums.

May 2nd
American Lymphedema Framework Project Stakeholders Meeting
Hosted by the American Lymphedema Framework Project, in Columbia, MO.

September 3rd – 7th
National Lymphedema Network’s 11th International Conference
Hosted by the National Lymphedema Network, in Washington, DC.

September 7th – 9th
Lymphedema Lobby Days
Hosted by the Lymphedema Advocacy Group, in support of the Lymphedema Treatment Act, in Washington, DC.

October 24th
American Lymphedema Framework Project Stakeholders Meeting
Hosted by the American Lymphedema Framework Project, in Atlanta, GA.

October 25th
Lighthouse Lymphedema Network’s annual Educational Program
Hosted by the Lighthouse Lymphedema Network, in Atlanta, GA.

Remember that registration for our Lymphedema Lobby Days is now open! Complete information is available on the Lobby Days page of our website. No experience is required, and we hope to see many of you there!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org

March 28, 2014: Cosponsor count, Lymphedema Lobby Days, and More!

Cosponsor Count:

We are currently at 26 cosponsors, a complete list of which can be seen here

If your Rep’s name isn’t yet on this list, please use the advice below the line to ask “why not?”. 
Some offices take more repeated contact than others, so persistence is always the key.

Lymphedema Lobby Days:

We are pleased to announce that registration for our 2014 Lymphedema Lobby Days is now open!

Arrival day is Sunday, Sept. 7th, with an orientation reception that evening (time TBD), which all participants must attend. Monday and Tuesday, Sept. 8th and 9th, will be full days on the Hill. A hotel group rate is available for 
Sept 7th-10th.

More information is available on our website, just click here. No experience is necessary. 
You are all invited and we hope to see many of you there!

On A Personal Note:

In follow-up to his article entitled “Why Businesses Should Support The Lymphedema Treatment Act”, I was interviewed by Phil Hall. If you’ve ever been curious to know how the Lymphedema Treatment Act came to be, click here.

In Conclusion:

If you read Phil Hall’s interview you’ll see that I am just an ordinary person like you. I am a mom on a mission to get her little boy’s garments covered. We are all in this for personal reasons, and that is what makes us such powerful advocates!

The first time I went to DC to meet with congressional offices about this bill it was with just a handful of people. Eleven of the twelve of us had never done anything like it before, and quite frankly, we were nervous that they might not take us seriously.

Imagine our surprise and delight when we realized that what we thought was our weakness turned out to be our greatest asset! Since then, time and again we have heard from members of Congress and their staff how much they appreciate hearing straight from us, the people affected, instead of paid lobbyists.

So don’t doubt whether anything you do matters – it does! Write those letters, make those phone calls, schedule those district meetings and come to DC if you can. If we each commit to getting just our own members of Congress on board we can move mountains!

Change will happen when we make it happen. Thank you for being on this  journey with me. 

~ Heather

We still need many more cosponsors to get this bill passed. Perhaps you have received a “form letter” response. If so, it will read something like this:
The letter will name the bill, then the committees it was referred to. It will go on to tell you a bit about lymphedema and about what the bill would do. And it will say something to the effect of keeping your thoughts in mind should the bill come to the floor for a vote.
Do not be satisfied with a noncommittal form letter. Keeping the constituent’s thoughts in mind if the bill were to reach the floor for a vote will not matter if it never gets to the floor. For the bill to get to the floor we need many more cosponsors. Therefore, the only meaningful support a member of Congress can give at this stage is to cosponsor.  

Persistence is the key! Below are step-by-step instructions. Based on the action you have already taken, go to whatever step is appropriate.

1.) If you haven’t already, write your to Rep using the submission form on our website. Add a brief paragraph to the provided template letter, explaining why this bill matters to you.

2.) Follow-up with a phone call, preferably a few days after sending your email. I cannot stress enough how important this step is! You can find a link to look up the number to call and see a sample script below my signature. 

3.) Ask others you know to also send emails, using the submission form. The more correspondence an office receives, the higher a priority will be placed on this bill by that office.

4.) Schedule a meeting at your Rep’s closest district office. This is an election year, so members of Congress have more work weeks in their districts and will be more eager than usual to meet with constituents and win their votes. Detailed instructions on how to schedule a district meeting and prepare for one are outlined in our State Team Handbook, which you can download here .

Thank you for your continued support, and don’t hesitate to contact me if you have a question about anything above.
______________________________
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

CALLING INSTRUCTIONS & ADVICE:

* Find your Representative’s DC number at www.house.gov/representatives/find.
* Ask to speak to the aide in charge of health legislation. It is likely that you will be transferred to voicemail, so have a concise, pre-planned message ready. Be sure to ask for a return call and leave your number. 

Here is a sample script for your message:

“My name is (your name) and I am calling regarding HR 3877, the Lymphedema Treatment Act. I have written your office about this legislation, asking if Representative (name) would sign on as a cosponsor, and have not yet received an answer. This bill is very important to me and I would like to talk with your office about the merits of this bill. I would appreciate a call back at (your number).”
When speaking to the health aide, remember that the most important thing to convey is why passage of this legislation is so important to you, and how it would improve your quality of life (or that of your patients, loved one, etc.). Your personal stories are the most important and persuasive tools we have! 

Be brief and to the point, showing why the legislation is needed. Add that Medicare automatically denies coverage for doctor-prescribed compression supplies because they do not fit under a benefit category. Thus, many patients suffer from disease progression and painful, costly infections. This bill will enable compression supplies to be covered under the DME (Durable Medical Equipment) benefit category. 

MOST IMPORTANT: Conclude by asking when and how you can expect to hear from them regarding your Representative’s decision to cosponsor.

 

March 6, 2014: Check out this great article about the LTA!

Happy Lymphedema Awareness Day! It’s my pleasure to share with you today a wonderful article entitled “Why Businesses Should Support The Lymphedema Treatment Act“.

Please ask your local, plus national, papers to reprint this article by using the easy Media Contact Form on our website.

Just copy and paste the full link to this article (http://www.business-superstar.com/words-of-wisdom/why-businesess-should-support-the-lymphedema-treatment-act/) into the submission form, along with your own words about why this issue is important to you and the millions of Americans with lymphedema.

If you are a Twitter and/or Facebook user, you can also let others know about this article via those channels.

And if you are frustrated by the fact that few people know March is Lymphedema Awareness Month, and March 6th is Lymphedema Awareness Day, know that we are, too. That’s why we are working on getting a Resolution introduced into Congress, so that our awareness month receives the federal and national recognition it deserves!

Thank you for your continued support!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
Feb 28, 2014: Is your Reps name on this list of cosponsors?
We have 15 cosponsors to date. They are:

(CA-5) Mike Thompson
(CA-18) Anna Eshoo
(CA-19) Zoe Lofgren
(CT-2) Joe Courtney
(IA-1) Bruce Braley *
(IA-3) Tom Latham
(MO-1) Wm. Lacy Clay
(NC-3) Howard Coble
(NJ-7) Leonard Lance *
(OR-3) Earl Blumenauer *
(OR-4) Peter DeFazio
(TN-1) David “Phil” Roe
(WA-1) Suzan DelBene
(WA-7) Jim McDermott
(VA-11) Gerald Connolly
* Denotes co-leads who introduced the bill with 
our lead sponsor, Rep Dave Reichert (WA-8)

This is a great start, but we still have a long way to go with 435 members of the House. Perhaps you have received a “form letter” response. If so, it will read something like this:

The letter will name the bill, then the committees it was referred to. It will go on to tell you a bit about lymphedema and about what the bill would do. And it will say something to the effect of keeping your thoughts in mind should the bill come to the floor for a vote.
Do not be satisfied with a noncommittal form letter. Keeping the constituent’s thoughts in mind if the bill were to reach the floor for a vote will not matter if it never gets to the floor. For the bill to get to the floor we need many more cosponsors. Therefore, the only meaningful support a member of Congress can give at this stage is to cosponsor.  

Persistence is the key! Below are step-by-step instructions. Based on the action you have already taken, go to whatever step is appropriate.

1.) If you haven’t already, write your Rep using the submission form on our website. Add a brief paragraph to the provided template letter, explaining why this bill matters to you.

2.) Follow-up with a phone call, preferably a few days after sending your email. I cannot stress enough how important this step is! A link to look up the number to call, and a sample script, are below my signature. 

3.) Ask others you know to also send emails, using the submission form. The more correspondence an office receives, the higher a priority will be placed on this this bill by that office.

4.) Schedule a meeting at your Rep’s closest district office. This is an election year, so members of Congress have many district workweeks and will be more eager than usual to meet with constituents and win their votes. Detailed instructions on how to schedule a district meeting and prepare for one are outlined in our State Team Handbook, which you can download here .

Thank you for your continued support, and don’t hesitate to contact me if you have a question about anything above.
______________________________
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

CALLING INSTRUCTIONS & ADVICE:

* Find your Representative’s DC number at www.house.gov/representatives/find.
* Ask to speak to the aide in charge of health legislation. It is likely that you will be transferred to voicemail, so have a concise, pre-planned message ready. Be sure to ask for a return call and leave your number. 

Here is a sample script for your message:

“My name is (your name) and I am calling regarding HR 3877, the Lymphedema Treatment Act. I have written your office about this legislation, asking if Representative (name) would sign on as a cosponsor, and have not yet received an answer. This bill is very important to me and I would like to talk with your office about the merits of this bill. I would appreciate a call back at (your number).”
When speaking to the health aide, remember that the most important thing to convey is why passage of this legislation is so important to you, and how it would improve your quality of life (or that of your patients, loved one, etc.). Your personal stories are the most important and persuasive tools we have! 

Be brief and to the point, showing why the legislation is needed. Add that Medicare automatically denies coverage for doctor-prescribed compression supplies because they do not fit under a benefit category. Thus, many patients suffer from disease progression and painful, costly infections. This bill will enable compression supplies to be covered under the DME (Durable Medical Equipment) benefit category. 

MOST IMPORTANT: Conclude by asking when and how you can expect to hear from them regarding your Representative’s decision to cosponsor.

 

Jan 28, 2014: Will your Representative be one of our first cosponsors?

Have you written your Representative since the LTA was introduced on January 15th? If not, please use the quick and easy submission form on our website to send your letter today.

Once you’ve written, we encourage you to follow up with a phone call. You can look up the number to your Representative’s DC office here. Ask to speak to the aide in charge of health legislation. It is unlikely that you will be transferred to him or her, so have a pre-planned and concise message ready, such as this one:

“My name is (your name). I am calling regarding HR 3877, the Lymphedema Treatment Act. 
I have written your office about this legislation, asking if Representative (name) would sign on
as a cosponsor, and have not yet received an answer. This bill is very important to me 
and I would like to talk with the health aide about the merits of this bill. Could he or she 
please return my call? My phone number is (your number).”
By next month’s Newsletter we will know which Representatives have been among the first to sign on as cosponsors, and I will share that list with you. Please do whatever you can to get your Representative’s name on that list.

And remember to spread your influence. Ask everyone you know, in any state, to write a letter. 
Constituent contact makes all the difference! 

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

Jan 15, 2014: Our bill was reintroduced in Congress today! 

All our hard work and preparation over this past year has come to fruition today! This morning the Lymphedema Treatment Act was introduced into the 113th Congress (bill number HR 3877) by our lead sponsor, Rep. Reichert (R-WA), and co-leads Rep. Lance (R-NJ), Rep. Blumenauer (D-OR), and Rep. Braley (D-IA).
You can read a very moving press release that includes quotes from each of these members of Congress.This introduction brings us to a new starting line. 
Now we need your help asking all members of Congress to support this bill!
 
Please take 5 minutes to send a letter to your Representative, asking him/her to cosponsor this bill, by using the submission form on our website. A brief template letter is provided, but please make your letter even more effective by adding one personalized paragraph reflecting your own perspective and experiences.

I would like to extend a special “thank you“ to our State Teams in WA, NJ, OR, and IA, whose efforts procured this bipartisan group of strategically chosen Representatives to introduce our bill.

Now it’s your turn to make a difference! Even if your Representative cosponsored the LTA in the 112th Congress, he or she must do so again because bills and cosponsors do not carry over from one Congress to the next.
Thank you in advance for writing your Representative today, urging him or her to cosponsor the LTA, and when you’re done you can use our Tell-A-Friend form to ask others to do the same!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

Jan 1, 2014: Exciting news on the status of our bill and much, much more!

Happy New Year! 
 
Below you’ll find exciting news on the status of the Lymphedema Treatment Act (LTA) and so much more. 
But first, I’d like to take a moment to thank all those who make our efforts possible.

 

Reintroduction of the Lymphedema Treatment Act is near! 
 
In the final days before Congress broke for recess, our bill sponsor, Rep Reichert (WA), approached three other members of the House, Rep Braley (IA), Rep Blumenauer (OR), and Rep Lance (NJ), to ask them to introduce the LTA bill with him as original “co-leads.” These three members were carefully selected based on their committee assignment, party affiliation and support for the issue. Our goal is to have bipartisan support in both “committees of jurisdiction” (through which the bill must first pass). 

Thanks to our State Team members in Iowa and Oregon, Reps Braley and Blumenauer have already said “yes”! Our NJ Team is still working to secure a “yes” from Rep Lance soon after Congress returns to work on Jan 6th. Once our final co-lead is secured we will be ready to introduce the bill. 

NJ has introduced a state lymphedema treatment mandate! 
 
Our NJ Team has been busy, indeed, because, in addition to their work building support for the Lymphedema Treatment Act, they also succeeded in getting a NJ state lymphedema treatment mandate introduced in 2013. A copy of this bill can be read here. If you live in NJ, please consider joining your State Team because they could really use your help. 

CA insurance “Marketplace” plans begin covering compression supplies today! 

The Patient Protection and Affordable Care Act stipulates that all new insurance policies offered in the “Marketplace” must cover certain “essential benefits.” In anticipation of the need to provide further guidelines to California insurers who would be selling plans through the exchange, the CA Department of Managed Health Care added a new section to Title 28 of the California Code of Regulations. In this new section it lists devices required to be covered, including “lymphedema wraps and garments”! You can read more detailed information about this new law, and how lymphedema supplies came to be included, here. I would like to extend our thanks and congratulations to Bob Weiss, a long-time patient advocate in CA, whose efforts have made such a difference in CA and the nation. 

Join your state’s team! 
This marks the first anniversary of our State Teams. We’ve reached 279 team members in 41 states, representing approximately 70 Congressional districts in the nation. It’s a great start, but we need at least one team member in each of the 435 Congressional districts. We still need to grow our teams to represent 365 more Congressional districts. Will you help us get there? If you are not already a member of your state’s team please consider joining this grassroots effort to give a voice in Congress to lymphedema patients and all who care about them. Click here to join or learn more. 
 
Come to DC to take part in our 2014 advocacy days! 
We are just beginning to plan for this year’s trip, which will be held September 7th-9th. We will announce additional information as it becomes available. Click here to read what participants had to say about our last trip. 
 
Thank you in advance for helping us to accomplish more great things in 2014! 
Heather Ferguson 
Founder and Executive Director 
Lymphedema Advocacy Group 
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

Dec 1, 2013: Holiday Wishes

The Lymphedema Advocacy Group is an all-volunteer organization. Each board member has a deep personal connection to this disease and spends countless hours advancing our mission. Our work means a great deal to us, and so does your support. 

If you are able to include the Lymphedema Advocacy Group during this season of giving we would be extremely grateful. Every dollar really does make a difference to us! Secure donations can me made through PayPal, or sent by mail to: Lymphedema Advocacy Group, PO Box 1682, Carrboro, NC 27510.

In case you missed our November Newsletter, we’d like to mention that you can request free information cards to distribute in your area using our new Information Card Request Form. Through you, we have already distributed almost 90,000 information cards to raise awareness about lymphedema and the Lymphedema Treatment Act! Your support makes this, and all our work, possible.

The entire Lymphedema Advocacy Group board joins me in sending you our gratitude and sincere wishes for a joyous holiday season!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

Nov 1, 2013: We must bring lymphedema out of the shadows!
Three years ago the Washington Post ran a story referring to lymphedema as “cancer’s dirty little secret.” The other non-cancer causes of lymphedema are hidden in even greater obscurity. It’s time for us to bring lymphedema out of the shadows!
One of the most fundamental challenges the lymphedema community faces is lack of awareness, even among medical professionals. Many of you have shared your Lymphedema Stories, which we feature on our blog, and far too many of them tell tales of misdiagnosis or delayed diagnosis.

We are pleased to announce that it’s now even easier to request some of the information cards we produce to educate people about lymphedema and the Lymphedema Treatment Act. Click here to view the card and here to place your order, and we will happily send them to you free of charge. 

It saddens me to think about how many people are out there suffering needlessly because they haven’t been diagnosed, or because their doctors did not know to refer them for proper treatment. I know that, under different circumstances, my young son Dylan, who has congenital primary lymphedema, could have been among them. Furthermore, few know of our effort to pass a law that will improve coverage for essential components of lymphedema treatment.

Each of us must be our own advocate and take charge of spreading awareness in our community! Please think about applicable places you visit, or could visit, which would be willing to distribute these cards: doctor’s offices, therapy offices, compression garment fitters, support groups, clinics, cancer facilities, etc. Estimate how many will be used at each site and consider your ability to refresh the supply from time to time, then simply place your order.

Thank you in advance for doing your part to make the public aware of this disease.

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

Oct 1, 2013: Ways you can make a difference this month.

October is Breast Cancer Awareness month, which presents a variety of opportunities to also raise awareness about lymphedema and support for the Lymphedema Treatment Act.  

Nearly everyone is already aware of breast cancer but few know about lymphedema, the common side-effect of treatment for breast cancer.  Please take this opportunity to help raise awareness by forging a public link between breast cancer and lymphedema.

Here are several ways you can make a difference this month:

  • Distribute our information cards at local events, which we are happy to send you free of charge. Just email us ASAP by replying to this email, and include the quantity you need and your mailing address.
  • Send a letter to the editor. You can send to both local and national newspapers in one step through our website! Just visit the Write the Media page of our website to get started. To help you compose your message some talking points are below my signature.
  • If you or a loved one is a breast cancer survivor please contact local and national breast cancer organizations to stress the importance of improving insurance coverage for lymphedema treatment. Urge them to support the Lymphedema Treatment Act and work with us to ensure passage of this important bill.
Thank you so much for your help!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

Letters to the editor:Remember to include why this topic is important to you, and keep in mind that the shorter your letter the better the chance of it being printed.

Some talking points for you to consider are: 
* Lymphedema is a common side effect of breast cancer treatment that affects 20% of all survivors. 
* Symptoms can appear soon after treatment, or not for years or even decades. 
* Lymphedema is a chronic disease, and when not properly managed it can have a profoundly negative impact on a person’s health, function and quality of life.
* Medicare, as well as many Medicaid and private insurance plans, do not cover the medically necessary compression garments that are the mainstay of lymphedema treatment. 
* Breast cancer patients deserve to be adequately informed about their risks, and should they acquire lymphedema, no insurance plan should fail to cover the compression garments that are essential to managing this life-long condition.

Sept 1, 2013: Does your Representative hold the fate of our bill in his/her hands? 
While the support of any member of Congress is important, some are especially important.  These are the men and women who serve on one of the committees who will hold a hearing on our bill, or who hold high ranking positions within their party. 
To see a list of these key members of Congress click here

Without these key members’ support for moving the Lymphedema Treatment Act through committee it will never reach the floor for a full vote. Therefore, especially if your Representative or Senator is on this list, please consider joining your state’s advocacy team.

The State Teams page of our website now has more information and an easy sign-up form

We also need your continued help in raising awareness. Check out these six easy ways you can increase awareness

I hope everyone has had an enjoyable summer and thank you again for your continued support of the Lymphedema Treatment Act!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

Aug 1, 2013: Why it’s taking so long to reintroduce our bill
It is taking longer than we had hoped to get our bill reintroduced. However, we are anticipating that this session’s bill will have added clarity and enhance our ability to attract the broad Congressional support that is necessary, hence making it well worth the wait. Congressman Reichert’s office, our new sponsor, submitted his requests to the non-partisan Congressional bill writers several months ago, and we are in the process of waiting for a draft to be returned to us.

Congressman Reichert, who has a great deal of experience, felt that taking the time get these revisions just right was important. Below my signature is actual correspondence between Congressman Reichert and HHS Secretary Sebelius, when he first began looking deeply into this issue last year.  Due to the Secretary’s response, together with lengthy discussions with Medicare directors, Congressman Reichert concluded that the bill should focus primarily on establishing a “Medicare-covered benefit defined in the statute” for the compression components of treatment. (See below.)

Additionally, we are working on adding a “Findings” section to the beginning of the bill. This section will provide essential information, an explanation of Complete Decongestive Therapy (CDT) as the standard of care for lymphedema, and references to studies and data that support the need for this coverage and it’s net cost savings. 

Meanwhile, we are using this time to step up our “ground game.”  If you have not already done so, I hope you will consider joining your state’s advocacy team, which you can read more about here, and please continue to help spread awareness using the easy ways outlined here. Your involvement in this all-volunteer, grassroots movement matters so much!

I know this cause is very personal to you, as it is me. I will see this through as long as it takes because I refuse to let my son with lymphedema, who is now six-years-old, inherit this problem. Patience and persistence are qualities we must continue to embrace in order to prevail.

Thank you for your continued commitment to passing the Lymphedema Treatment Act!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

This is Congressman Reichert’s question to the Secretary of HHS and the full text of her response, which shows why he believes the Lymphedema Treatment Act should be focused on establishing a defined benefit category for coverage of the compression components of treatment.
Congressman Dave Reichert’s question to HHS Secretary Sebelius

QUESTION:  Lymphedema affects an estimated 1.5 to 3 million Medicare beneficiaries. Individuals often need constant care to avoid recurrent infections. While Medicare does cover and pay for statutorily limited therapy and sequential compression pumps, many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression bandages and garments required for everyday self-care. I have heard from patients and providers that state compression garments are a necessary form of treatment for patients with Lymphedema. They state compression garments help to improve the quality of life and stave off reoccurring infections for patients. Why does CMS not cover these treatments? Does CMS need a statutory change in order to provide coverage for these garments?

Secretary Sebelius’s response

ANSWER:  Currently, Medicare covers durable pneumatic compressors, referred to as lymphedema pumps, and appliances used in conjunction with these pumps under the Part B benefit for durable medical equipment.  These equipment and accessories are used to treat lymphedema and are covered because they fall under a defined Medicare benefit category.  In order for items to be covered by Medicare, they must meet the definition of a Medicare-covered benefit defined in the statute.  However, it is important to note that although Medicare provides coverage for certain items, it does not provide coverage for every item with potential use for a person with a medical problem even if a physician prescribes the item.  Other devices used to treat lymphedema, such as sleeves and stockings, are not covered by Medicare because they do not meet the definition of durable medical equipment or any other Medicare benefit category established by law.

 

June 30, 2013: Our Action Center
While we wait for the reintroduction of the Lymphedema Treatment Act there are a variety of things you can do to support its eventual passage, all outlined under the “How You Can Help” menu on our website.

If you have not yet made a submission to our “My Lymphedema Story” campaign please consider doing so. We hope to have all 50 states represented, but right now do not have any stories from the following states/territories: AL – AK – HI – ID – KS – LA – MN – MO – MT – NE – NM – ND – RI – SD – UT – VT – WV – WY – DC & all other territories. You can read the stories submitted to date on our blog.

Also, your state’s advocacy team could really use your help. For more information please visit the “State Teams” page of our website and/or review the attached State Team Handbook . So far we have 201 state team members in 38 states – a great start but still a long ways from where we need to be, which is having members from every Congressional district in the country! Remember that this is an all grassroots effort and our continued progress depends on the involvement of people just like you.

Last but not least, this marks the one year anniversary of the addition of the “Action Center” to our website. This vital tool enables you to quickly and easily write your members of Congress, contact the media, and more. The Action Center, while being a costly on-going expense, has been a huge boon to our advocacy efforts! We are so very grateful for the support we receive from the following sponsors, who make the Action Center and our website possible: mediUSASolarisJoViPak,JuzoJobstLympheDivasFarrowMed, and Sigvaris.

We wouldn’t be where we are today with out the support of the many individuals, organizations and industry partners who have gotten behind this patient-driven movement… thank you all!

With gratitude,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

May 30, 2013: 5 easy ways you can spread awareness
Spreading awareness about the Act is so important!
In this Newsletter we will cover several easy ways you can help. 

Information Cards:

We will gladly provide you, free of charge, the information cards seen here . These are perfect for taking to doctor’s and therapist’s offices, support groups, compression garment fitters/suppliers, etc. Typically one pack of cards per physical location is appropriate. The cards are shrink wrapped in packs of 50, so please respond with the number of packs you need and the address you would like them mailed to.
 
Facebook:
Please “like” the Lymphedema Treatment Act Facebook page and post something about the Act on your Facebook page. You can compose your own message or use this one: Please support passage of the Lymphedema Treatment Act so that patients are no longer denied coverage for the compression supplies that are a vital component of lymphedema treatment. There are many quick and easy ways you can help – just visit the LTA website to learn how. Thanks for your support! www.LymphedemaTreatmentAct.org

Twitter:

If you use Twitter please follow us and re-tweet our tweets – https://twitter.com/LymphedemaACT1.

Tell-A-Friend Form:

Using the Tell-A-Friend form on our website you can quickly tell up to 10 people at a time about our website.
Websites/Blogs:
If you have a website or blog please consider including information and/or a link about the Act. Our logo is available hereand a “one-pager” with all of the most important information is available here. If you prefer to not write the post yourself then a pre-written message from me is available here .
Thank you for helping us spread awareness about the Act!

Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

April 26, 2013: Reintroduction update and how we are already making progress in this Congress! 

I know we are all eager for the Act to be reintroduced. We have had a lot of great communication with Congressman Reichert and his staff in recent weeks, and rest assured that they are making good progress on the preparations. Keep in mind that between the 111th and 112th Congresses our bill was not reintroduced until July, and that was with keeping the same sponsor. It takes patience, but we are getting there!

In the mean time, it’s exciting to see the progress that some of you are already making. Due to contact from constituents (Julie in Iowa and Barbara in Arizona), two new members of Congress (Braley and DelBene) have already reached out to Congressman Reichert’s office regarding their interest in our bill!

Now is the time to get your Congressperson informed and ready to support our bill too! The template language on our website submission form was recently updated. Please send a letter today (click HERE), and if at all possible take a couple of extra minutes to add some personalized text, which really does make a difference.

We are also pleased to share with you our newly created State Team Handbook. (State Team members, please note that since you first received this on April 20th we have already made some revisions to enhance clarity.)

If you have been on the fence about joining your state team please take a look at this comprehensive resource that will give you all the guidance and tools you need to be a powerful advocate for the Act. To date we have teams in 37 states – an amazing accomplishment for having only undertaken this initiative a few months ago. But we are still a long way from our goal of having team members from each Congressional district in every state. You are the key to getting us there!

If you are interested in joining your state’s team just reply to this newsletter or email us atinfo@LymphedemaTreatmentAct.org. And don’t forget to contact your Representative so that he/she will be an early supporter of the Act when it is reintroduced. Click HERE to send your letter now.

Thanks for your continued support!

Heather Ferguson
Founder and Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

March 27, 2013: State Teams Update & AARP
My thanks to those who submitted a letter to the editor, per the suggestion in last months Newsletter. A number of people did have their letters printed, and we’ve already seen some direct results from that effort. For example, Jenny in NJ was contacted by a state legislator who cited her letter in the paper and said he wanted to help; she and others from the NJ State Team now have a meeting scheduled with him!

Others have taken the initiative to contact the AARP, first Judy in TX, and then Mary in NY who recently received an encouraging response. We’d like to build on their efforts, and ask that if you are an AARP member please email them at “member@aarp.org“. Express to the AAPR your desire that they endorse and support passage of the Lymphedema Diagnosis and Treatment Cost Saving Act. State that the bill number was HR 2499 in the 112th Congress and is pending reintroduction in the 113th Congress by Representative Dave Reichert. Make sure to include your personal reason for wanting this bill passed.

To date we have teams in 31 states – can you help us reach our goal of all 50? We are in need of a “Team Liaison” in the following states: AL, AK, CT, DE, HI, ID, KS, KY, LA, MA, MS, MT, NH, ND, RI, UT, VT, WV & WY. If you reside in one of these states, and would consider serving as the liaison so that we can get a team started in your state, the simple responsibilities are listed below. 
We are just getting underway with our state teams, so now is the perefct time to join a team or start a team. Presently we have 139 state team members, with an ultimate goal of at least one in each of the 435 Congressional districts. Just respond to this email if you are interested or have additional questions, and a big thank you to all our current and future state team members! 

Heather Ferguson
Founder and Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
New to our Newsletter? Past issues can be read here.

Please help us ensure we have a team in every state!
Team liaisons are in charge of the following:
* Maintaining an Excel spreadsheet, or Google Document, with the contact information of all team members in their state, and sending me a copy any time there are changes made. I will send you a template for this purpose.
* Handling the introduction of new members to the team as they join, and bringing them up to speed on the team’s advocacy effort.  I will send the liaison the new person’s name and email and they will take it from there.
* Serving as the point of contact between the team and myself. The liaison will convey to me, on behalf of the team, questions, ideas, reports on their progress, etc. Likewise, in circumstances where it would be more practical, I will communicate only with team liaisons instead of all team members.

March 1, 2013: March 6th Awareness Day, State Teams and more…

March 6th is Lymphedema Awareness Day. In honor of “our day”, I encourage you to submit a letter to the editor to increase awareness. You can do this very easily through our website, on this page. Just enter your zip code and you’ll have the option of sending to local and national papers in one easy submission form. Talking points are provided to help you compose your letter.

Regarding the reintroduction status of the Act, I don’t have any further news since my February 2nd report to you on this. If you missed that newsletter you can view it here

I do have some exciting news, however. We now have state teams underway in nearly 30 states, including over 100 advocates just like you! If you think you might be interesting in joining or becoming the first member of a team in your state, you can read more here. No experience or minimum time commitment is required.

And last, but certainly not least, we’d like to remind you that the Lymphedema Advocacy Group is all-volunteer, grass-roots organization, operating on a shoe-string budget. At the present time we need your help in order to continue to provide the information cards about the Lymphedema Treatment Act, seen here. To date we have supplied over 30,000 cards to individuals, businesses and other organizations, who in turn distribute the cards to make others aware of the Act. 

Please consider making a secure donation through PayPal, or by mailing a check to: The Lymphedema Advocacy Group, PO Box 1682, Carrboro, NC 27510. Financial contributions in any amount, no matter how small, are greatly appreciated.

Thank you for your support!

Heather Ferguson
Founder and Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

February 2, 2013: Update on the reintroduction of the Act

Our sponsor for the 113th Congress, Congressman Dave Reichert (R) of Washington State, who is a member of the powerful House Ways and Means Committee to which our bill has been referred, is working on preparations for reintroduction of the Lymphedema Treatment Act. His first task in preparing the bill is to see what framework might make the bill more palatable to members of Congress in this highly divisive and cost-conscious environment. 

Congressman Reichert’s second task is to secure a Democratic “co-lead” for the bill who is a member of the Ways and Means Health Subcommittee.  The best-case scenario, especially in these partisan times, is to have legislation introduced by a member of both parties. The Chairs of the Congressional committees were only recently announced and the full membership of each subcommittee is not finalized, so the most appropriate co-lead cannot be chosen quite yet.

Meanwhile, the Lymphedema Advocacy Group board is looking for Democratic and Republican co-leads to simultaneously introduce the bill in the Senate when it is ready.  Please be mindful that this process of preparing for reintroduction will take time, but be worth the wait. We are very fortunate to have such an experienced new sponsor who can use his stature in Ways and Means to promote our bill and ensure it is optimally positioned for passage when it is reintroduced!

Heather Ferguson
Founder and Executive Director, Lymphedema Advocacy Group
info@LymphedemaTreatmentAct.org
www.LymphedemaTreatmentAct.org

 

January 3, 2013: Recap of the 112th Congress and looking ahead to the 113th

Today marks the first day of the 113th Congress. Over the past two years we made incredible progress in support of the Lymphedema Treatment Act. Accomplishments during the 112th Congress include:

  • Nearly doubling our number of House cosponsors compared to our total for the 111th Congress.
  • Gaining the endorsement of several key groups including the American Cancer Society, the American Physical Therapy Association (APTA), the American Occupational Therapy Association (AOTA), the Oncology Nursing Society (ONS), the Lymphology Association of North America (LANA), and the AmericanLymphedema Framework Project (ALFP).
  • Executing a very successful advocacy trip to DC with participants from around the country who visited numerous Congressional offices and conducted a standing room only Staff Briefing. We gained many cosponsors as a direct result of this in person advocacy.
  • Launching a top notch Legislative Action Center on our website powered by Capwiz/CQ Roll Call.
  • Securing a willing sponsor for a Senate companion bill, Senator Jeff Merkley of Oregon, who is a Democrat and currently looking for a Republican with whom to co-introduce the bill.
  • Securing a new sponsor for our House bill, Congressman Dave Reichert of Washington, because our former sponsor, Congressman Larry Kissell of North Carolina, was not reelected.

This progress is only possible due to our wonderful supporters. I would like to acknowledge the following entities, who have our deepest appreciation:

During the 113th Congress we hope to organize two advocacy trips to DC so that more of you are able to join us in making this important direct contact with law makers. We anticipate the first trip being in the late spring or early fall this year, and the second in early September of 2014. The second will be in conjunction with the NationalLymphedema Network’s biennial convention that will be taking place in DC at that time. We will post more details about the Lymphedema Lobby Days on our website as they become available, and of course announce them via this newsletter.
 
I am extremely proud of the progress we have made. As we enter this new cycle of Congress your continued involvement is critically important. When many people do just a little we accomplish a lot, and we need your help in growing our grassroots base of support. Please take a moment to please tell a few friends about our website so they can get involved. Just use our easy Tell-A-Friend form to fill in the email addresses of up to 10 people at a time.

Thanks for your continued support of this important legislation and I look forward to the progress we will make in 2013! 

Heather Ferguson
Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 

December 12, 2012: Final opportunities to support the Act in 2012

You have my most sincere appreciation for everything you have done to support the Lymphedema Treatment Act this year!

I know we are all even busier than usual during this season, but if you haven’t yet thanked Congressman Kissell and used our “smart” alert, I hope you can take a moment to complete each.
 
• Sunday, Dec 16th deadline…please thank Congressman Larry Kissell, our bill sponsor for the 111th and 112th Congress, for being the first member of Congress in history to introduce a bill to improve coverage for lymphedema treatment! Express your appreciation by adding your name to our thank you letter. (Click HERE to add your name.)
 
• Use our “smart” Action Alert to either thank your Representative if they cosponsored HR 2499 or express your disappointment if they did not. In either case you will be laying the groundwork for the 113th Congress by asking that they cosponsor the bill as soon as it is reintroduced next year. (Click HERE to send your letter.)
 
• With the Washington State team, who succeeded in securing Representative Reichert as our new sponsor for the 113th Congress, serving as a role model, we are now beginning the process of building similar teams in other states. If you are interesting in working with others in your state please respond to this email.
 
I wish you and your loved ones the happiest of holidays!
 
Heather Ferguson
Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
 
 
November 30, 2012: New Action Alert – let your Rep. know how you feel about their support of our bill, or lack thereof!
 
Did your Representative cosponsor HR 2499 or did he/she ignore your requests to support this bill? 
Send a letter now to express your appreciation or disappointment!
 
This is a new “smart” Action Alert – based on your zip code the system will be able to determine whether or not your Representative has cosponsored the Lymphedema Treatment Act. A thank you letter will appear if they have, a letter expressing your hope that they cosponsor next year will appear if they have not. In either case you will have the option to add your own personal text if you desire. 

Please take a moment to let your Representative know how you feel. Regardless of whether or not he/she was a cosponsor in this Congress you’ll be laying the ground work to secure them as a cosponsor in the next Congress! (ClickHERE to send your letter.)

And, don’t forget to thank our bill sponsor for the 111th and 112th Congress, Larry Kissell, for introducing this legislation. Please take a moment to express your appreciation by adding your name to our thank you letter. (Click HERE to add your name.)

Thank you in advance for completing these two quick and easy, yet very important tasks!

Heather Ferguson
Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 
November 28, 2012: Breaking News – announcing our new bill sponsor!
 
I am so pleased to announce that Representative Dave Reichert of Washington State’s 8th Congressional District will sponsor the Lymphedema Treatment Act in the 113th Congress!
 
Representative Reichert currently serves on the Ways and Means Health Subcommittee, to which our bill has been referred. We have seen that he and his staff believe in this issue and are working hard on it. We are truly delighted by his recent commitment to sponsor our bill.
 
I would like to recognize and thank Lymphedema Advocacy Group board member Elaine Eigeman and the dedicated team of patients and health care professionals who joined her to meet with Congressman Reichert to secure his support.
 
Once again, this is a testament to the power of patient-driven grass roots advocacy and how we each can make a difference when we get involved! Kudos to our “Washington State Team” of lymphedema patient advocates. If you would like advice and support in building a similar team in your state please reply to this email.
 
Heather Ferguson
Executive Director, Lymphedema Advocacy Group
 
November 14, 2012: How this election affects our bill
 
*This update is packed with essential information, please read through to avoid confusion.*

1.) What We Need You To Do Right Now

First, please take a moment to thank Congressman Kissell for his sponsorship of our bill in both the 111th and 112th Congress. We are saddened that he was not reelected, but will be eternally grateful for all he has done for us. Click HERE to add your name.

Second, please continue to write your Congressperson if they are not yet a cosponsor. Click HERE to view the cosponsor list and HERE to send your letter. We have very few weeks remaining to try and gain more cosponsors during this Congress.

2.) The Election Results

The breakdown of our cosponsors is as follows:
72 of the 78 who ran for reelection (92%) were reelected.
6 of the 78 who ran for reelection (8%) were not reelected.
14 (15%) of our cosponsors did not run for another term or ran for another office, two of whom were elected to the Senate.

The bottom line is, of our 92 current cosponsors, 72 (78%) will remain in office for the next Congress. A complete list of all our cosponsors and their reelection status is available HERE .

3.) What Happens When The New Congress Begins In 2013

Bills do not carry over from one Congress to the next. All bills that have not been passed into law must be reintroduced in the next Congress. In the process, they receive a new bill number.

Because our current sponsor was not reelected, the Lymphedema Advocacy Group board will be working to secure one of our current cosponsors as our main sponsor to reintroduce the bill next year.

Cosponsors also do not carry over from one Congress to the next. Once a Congressperson cosponsors a bill, however, they are very likely to sign back on to that bill when it is reintroduced in subsequent Congresses. From the 111th Congress to the 112th 90% of our reelected cosponsors signed back on, so please keep the pressure on your Congressperson to cosponsor if they haven’t already. (Click HERE to send your letter now.)

4.) Why We Will Succeed

As more people become aware of the Lymphedema Treatment Act and write their members of Congress our Congressional support will continue to grow. We made considerably more progress in the 112th Congress than the 111th, and together we’ll go even farther during the 113th Congress. Please continue to further our progress by using the links provided above and below.

The federal legislative process is not easy, and it’s important to remember that a bill like ours will take many years to get passed. It is a long and tedious process that can feel frustratingly slow at times, but those who succeed do so because they have the will to endure the process. They gather more support each year and learn better strategy. With your help, we will persevere as long as it takes. We will succeed! 

Heather Ferguson
Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 
October 26, 2012: VOTE, for the sake of our lymphedema bill!
 
Election Day Is Almost Here – Please Vote:

Has your Representative ignored your request for him/her to support the Lymphedema Treatment Act? Or, is he/she already a cosponsor? (Not sure, click HERE)

If how your Representative has responded, or failed to respond, influences your vote then that is one more reason to make sure you vote early or get to the polls on Nov 6th! 

I will report to you shortly after the election on how many of our cosponsors are reelected.
 
We have worked so hard to get this far and hope to retain as many of our cosponsors as possible.
Seeking Volunteers To Assist With The Following:

* An individual experienced in public relations who is familiar with preparing press releases and media communications.
* An attorney familiar with non-profits who can offer guidance and answer questions as needed.

Interested parties can respond to this newsletter or contact Heather Ferguson at info@LymphedemaTreatmentAct.org to get more information.

Thank you for your support,
Heather Ferguson
Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
 
October 1, 2012: More easy ways you can support passage of this bill…
 
Our House cosponsor count is now at 92! However, although it is only the beginning of October there is very little work time left in this Congress. To reach our goal of at least 100 cosponsors by years end we cannot let up!

Click HERE and then on “cosponsors” to see if your Representative is a cosponsor.  If he/she is not, please click HERE to use our submission form with template letter. Or, if you would like to submit a completely custom letter click HERE for instructions. If you have written before and your Representative still hasn’t cosponsored then a custom letter is a great option!

Contacting your members of Congress and securing their cosponsorship is a priority, 
but these are other ways you can support passage of the Lymphedema Treatment Act:

Refer a friend to our website with our easy Tell-A-Friend form
Add our widget/plugin to your website or blog
Distribute our flyer or information cards
Visit our Cafe Press store
Sign our change.org petition
Write the Department of HHS
Share your lymphedema story
Write the media (contact info provided)
Donate financial support (PayPal accepted)
Participate in our next advocacy trip to DC (spring of 2013)

Thanks for your continued support!

Heather Ferguson
Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

 
September 2, 2012: Sign our new petition and more
 
Going into the August recess our cosponsor count was 89. Although members of Congress and their staff still receive and review your letters during this time, while in recess new cosponsors cannot officially be added, therefore, I have no updated total to share with you.  Remember that persistence is the key to success when it comes to Congress, so please write again if you have not done so recently.
* Please click HERE to send your letter to Congress.

Last month we launched a campaign asking the Department of Health and Human Services to use their influence and authority to help us improve lymphedema treatment coverage.  To date only a small fraction of you have submitted a letter.  It is a simple submission form with template letter provided, so please contact HHS in the near future if you have not already done so.
* Please click HERE to send your letter to HHS.

And finally, it is my pleasure to introduce you to Jennifer Hovatter, one of the Lymphedema Advocacy Group Board members. Jennifer lost her husband Thomas at the young age of 43 to a fatal infection, which was a complication of his untreated lymphedema. With proper insurance coverage his death could have been prevented. In Thomas’ memory Jennifer has created a petition at change.org to help raise more awareness and support for our cause.
* Please click HERE to read and sign Jennifer’s petition.

 
Sincerely,
Heather Ferguson
Chair, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
 
August 1, 2012: Two great new advocacy tools
 
We are thrilled to announce these additions to enhance your advocacy:
 
Users can now attach a photo to accompany their advocacy messages, 
because with lymphedema a picture really can be worth 1000 words!
 
And, this month you have the opportunity to contact the Department of Health and Human Services (HHS), 
asking that they use their authority and influence to aid us in improving lymphedema treatment coverage!
 
Please submit a letter to HHS at your earliest convenience. As with our Congressional submission form, a template letter is provided and the option to add personal text and a photo is available – CONTACT HHS

Our House cosponsor count is now up to 86, but we need your continued help to reach our goal of 100 by years end. If you have not submitted a letter to your members of Congress through our new Legislative Action Center please do so, and include a photo if you desire – CONTACT CONGRESS

Senator Merkley from Oregon remains eager to sponsor the bill in the Senate but has yet to secure a willing Republican cosponsor. For those of you new to our Newsletter, Senator Merkley is a Democrat and he hopes to get the Senate bill off to a strong bipartisan start by co-introducing with a Republican. Please help us make this a reality – CONTACT CONGRESS.

 
Sincerely,
Heather Ferguson
Chair, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
 
July 20, 2012: New Legislative Action Center for the Lymphedema Treatment Act!
 
Thanks for your past action to support the Lymphedema Treatment Act! We are pleased to announce that we’ve made some exciting changes to our website – we invite you to visit and use our new Legislative Action Center powered by Capwiz/CQ Roll Call. 

This change will enable us to greatly expand our advocacy efforts. But in order to make full use of all the new tools available to us, we need to have some basic information from each of you, such as your complete residential address, so that we can match you to the proper Congressional district. For many of our current subscribers we have only an email address. 

Please take a moment to make sure we have your complete information – just click here and scroll down to “Subscription Management”. 

With this information we will be able to create targeted Action Alerts. For example, for those of you whose members of Congress serve on one of the all-important Health Subcommittees that will someday hold the fate of our bill in their hands, we can create a custom email for you to send just prior to their vote on our bill. Or, for those of you who have lymphedema as a result of cancer treatment, we can create a custom email for you to send to the Congressional Cancer Caucus members, explaining the cancer/lymphedema connection and urging them to support this bill. 

There are numerous possibilities and these targeted alerts could be a great asset in raising support for our bill. So thanks for taking a moment to ensure we have your essential information by clicking here and scrolling down to “Subscription Management”. And although we’d be sad to see you go, if you do not wish to receive any emails from us you can simply use the unsubscribe link at the bottom of this email now, or at any time in the future. 

We are grateful for your continued support and are pleased that our new Legislative Action Center will provide you with even more ways to make a difference. With your help we can and will improve lymphedema treatment coverage for all Americans! 

Sincerely, 
Heather Ferguson 
Chair, Lymphedema Advocacy Group 
www.LymphedemaTreatmentAct.org 
info@LymphedemaTreatmentAct.org