Join us for Lymphedema Lobby Days in DC



2014 Lymphedema Lobby Days ~ September 7th-9th
Registration is now open! 
Complete information is below. 

Lisa and her son Michael, who has primary lymphedema, meeting with their Congressman, Leonard Lance, who is a co-lead of the Lymphedema Treatment Act.

Lisa and her son Michael, who has primary lymphedema, meeting with Leonard Lance,
their Representative, who is a co-lead of the Lymphedema Treatment Act.

Arrival day is Sunday, Sept. 7th. The Lymphedema Advocacy Group (LAG) will host an orientation reception
that evening (time TBD, but will not be earlier than 5pm.) All Lobby Day participants are required to attend,
because it is here that you will receive your meeting materials, name badges, and other information. Monday and Tuesday, Sept. 8th and 9th, will be full days on the Hill. We strongly encourage you to participate in both days,
if at all possible.

All participants must complete a simple registration form so that we know who to expect and how to reach you.
Click here to register.
For your convenience, a hotel group rate of $189/night is available Sept 7th-10th at the Crystal City Hilton in Arlington, VA. You are free to stay elsewhere, but you must attend the orientation reception on the evening of September 7th, which will be held at this hotel. (Those attending the NLN Conference may want to arrange to
extend their stay at that hotel, or move over to the Crystal City Hilton.)
Availability and Cut-Off Date
* The cut-off date for the group rate discount is Friday, August 8th.
*  Room availability at the discounted rate is on a first come, first served basis.
Should you be told that the group rate is sold out prior to the cut-off date please contact us
at, and we will attempt to add more rooms to the block.
* Only standard rooms with one king or two queen beds are available at the group rate.
Making Your Hotel Reservation
* To place your reservation online click here.
* To place your reservation by phone call 1-703-418-6800, or 1-800-774-1500, and ask for the “Lymphedema Advocacy Group” rate.
Attendees are responsible for all of their own transportation arrangements. If flying in and staying at the Crystal City Hilton, a free shuttle is available through the hotel, the conveniently short distance to and from Reagan International Airport (DCA). To travel to and from the Hill, attendees can ride the Metro or take a taxicab. The hotel is a 3.5 block walk from the Crystal City Metro Station. A map and instruction for using the Metro, as well as phone numbers for all local taxicab companies, will be provided during the orientation reception.
Attendees are responsible for scheduling meetings with their own members of Congress. However, we will help to guide you through this process. We will also attempt to partner you with one or more persons from your state (if you wish), so that you can attend your meetings together, rather than individually. This is especially preferable when meeting with Senate offices. We will notify registered attendees when it is the appropriate time to begin contacting offices to schedule meetings, which will be no sooner than June 1st.
We will provide you with materials to leave behind at each congressional office you meet with. You will receive these materials at the orientation reception.
We expect that very few attendees will have had any prior experience meeting with congressional offices, and that is totally OK! Your personal relationship to lymphedema is all the qualification you need, and what makes you a powerful advocate. We will help you prepare for your meetings, and know what to expect, via email communications in advance of the Lobby Days, and in-person at the orientation reception.
When not meeting with your own members of Congress we will ask that you “drop-in” to additional offices from your state (and possibly others) with whom no meetings are scheduled. You will leave copies of the same printed materials we provided you with for your meetings, by giving them to the receptionist, and asking that he or she give them to the Health Aide. If you have impaired mobility please know that you only need to do what is manageable for you, and if doing these drop-ins in addition to your own meetings is not feasible we totally understand.
Registered attendees will receive email communications with additional information. If you have questions at any time, or need assistance with anything above, please email us at 

Read below to hear what participants had to say about past trips…

Our trip in Washington DC was an exceptional experience and one that I will NEVER forget.  As a therapist/ patient advocate I believe we were very effective in decimating the massage to our government officials and those legislative staff members that we were able meet with. On behalf of the millions of people who deal with lymphedema as patients, spouses, parents, children, physicians, therapists, and anyone who is touched by this condition.  I was honored to be there to speak for those who were unable to make the trip.  Those who spoke in the staff meeting and those who met individually with their representatives and senators were eloquent and direct.  The efforts we are make now will lay the foundation for generations to come and will affect not only those with lymphedema, but those who don’t even know that lymphedema is in their future.  Of course we wish we could have immediate results and that the legislative wheels could quickly FIX the logical requests that are so clearly stated in the Lymphedema Treatment Act.  We know that in these hard economic times, the spendable moneys are very tightly controlled, but our spirits are not dampened.  We have a strong resolve to see this common sense legislation through to the end because it is the right thing to do.  So, thank you to each and every one who attended the meetings in Washington DC, to each and every one who wrote letters in support of the bill, and to those who encouraged us on.  See you next year if we must.

Carol L. Johnson OTR/L, CLT-LANA  - NC & WA

It was a blessing to meet my fellow Lymphedema Warriors!  To say that the Washington DC trip changed and impacted my life is an understatement. I have never advocated anything and to be involved with a cause that directly affects my life and the lives of millions of others like me was awe-inspiring. I now have a deeper appreciation for the governmental process.  My sincere thanks to all of you for embracing me and showing me so much love it was amazing.  Thank you for your Support!

Cynthia “MsCjay” Judge – Las Vegas, NV

The experience can’t be compared to anything else I have ever done. I’d recommend it to anyone. On the first day our team of three met up with a legislative aide for a House Representative from New Jersey. This particular staffer acted non-committal when we asked for co-sponsorship of HR 2499. But at lunch on the same day in the huge House cafeteria, the actual Representative sat down at the end of our table. We knew it was him because one of the members of our team, a lobbyist for the Oncology Nursing Society, recognized him. The Congressman was busy with his i-phone, but after he finished a call he asked what our group was about. We had a wonderful opportunity to explain lymphedema and the bill directly to this member of Congress! He even knew someone who had lymphedema and died from complications. I was thrilled because I thought the chances of this particular man sitting down at our very table over all other tables at this particular time were remarkably slim. You never know whom you will meet at the most unlikely places in the hallowed halls and dining rooms of Congress!

Jan Hasak – Chico, CA

EDUCATION, INFORMATION, LEGISLATION!  I was truly blessed by being a part of the group who was in Washington, D.C. lobbying for passage of the Lymphedema Treatment Act.  The trip was very educational.  I learned so much about Lymphedema that I did not know. Knowledge is power!   I can now share more information with others.  The other advocates shared a lot of information with each other about what they are doing for treatment…… that was awesome!  I have a greater appreciation for the legislation process and pray that our legislators will… “do the right thing”…. by voting in favor of the Lymphedema Treatment Act that is so desperately needed!

Yolanda – Texas

It was a great experience to be part of such an important event.  I think that watching the patients from our group discuss their own stories and how lymphedema affects their lives was truly inspirational. I think that everyone who made the effort to come to Washington is truly amazing. I do not see how any lawmaker can listen to these stories and not want to be part of the bill’s success.

Michael Cannon – Chapel Hill, NC

Lymphedema Lobby Days was a great experience! It was inspiring to meet lymphedema advocates from all over the country.  A special thank you for those who have lymphedema who traveled to share their story  and frustration/challenges with lymphedema health care coverage.  I really enjoyed meeting with Congressional health care staffers.   The group I lobbied with was diverse; a therapist (me), a lady whose husband died from undiagnosed/untreated lymphedema, a lady with primary lymphedema since birth, and a prosthetic/orthotic business owner.  We increased knowledge of lymphedema and gave compelling rationale for passage of this bill.  Hope to see you all again next trip.  I especially encourage those who live near DC to join us next time.  You will be happy you did!

Susan Howard – Richmond, Virginia

I had the privilege to attend last year’s trip to DC to support the lymphedema bill as well.  I felt we really accomplished a lot, but this year with the added group it was amazing.  My grandmother always said that strangers were only friends you haven’t met yet.  How true!  I came away with such good vibes and truly a bunch of new life-long friends.  I feel we were just put with the right team members.  So glad to have been a part of this group – I am blessed beyond belief!  This bill will come to be – I have no doubt.  Thanks to all that were able to make it this year.  AWESOME, AWESOME – I am so on fire. Wish I could just do the work for the Lymphedema bill, unfortunately need to pay the bills.  Our quote for our support group in TN was taken from another group (with permission) – “One person can have a dream, when joined by others it becomes a vision, when put in to action it becomes a movement – movements change history.”  Can I get an AMEN on that – we are making history!!!!

Patti Graybeal – Johnson City, TN

I am so blessed to have such wonderful friends that I have made on this trip.  My group worked so hard, together as a team, but also as new friends.  God blessed Patti Graybeal and I with a new friend, Tiffany Howe.  Even though we may not be related by blood we are family at heart.  We all had a mission and came from all over to prove how important this bill is to each and every person who has lymphedema.  This is what God put in my heart to do in memory of my sweet husband Thomas’, who passed away at age 43 from a cellulitis infection because he could not get coverage for his lymphedema treatment.  I have a huge love for lymphedema patients and will do whatever it takes to help them.  I have devoted my life to this and we are going to see this bill passed.

Jennifer Hovatter – Johnson City, TN

We were the faces of “This Thing Called Lymphedema”, gathering in Washington, DC to advocate for passage of HR 2499.  Washington greeted us with perfect weather as well as Mother Nature’s seasonal fall art show of magnificent colors.  We were ALL faces of lymphedema: some were persons with lymphedema in varying stages; some were caretakers or parents; some were professionals such as OT’s, PT’s, doctors, or compression garment manufacturers or fitters; and one was a teenager, almost a young adult, born with congenital Lymphedema.  Every person’s story was different, but we are all affected by lymphedema.  We were grateful for the warm and listening faces of aides who learned more about lymphedema and the Lymphedema Treatment Act.  We will continue to gather in Washington, DC until this is passed.

Ann Matthews – Texas