Meet Our Advocacy Team
Advocates with the original sponsor of our bill, Congressman Larry Kissell of North Carolina
The Lymphedema Advocacy Group is an all-volunteer organization of patients, caregivers, healthcare professionals and industry partners. Our mission is to advance lymphedema care in the United States by advocating for improved insurance coverage for the diagnosis and treatment of the disease. For this purpose we work to increase awareness of and education about lymphedema amongst lawmakers, insurance providers and other relevant entities. We support attempts to improve coverage at both the state and federal levels and encourage all members of the lymphedema community to become active participants in this process.
Heather Ferguson resides in Charlotte, NC with her husband Brian and twin boys Devdan and Dylan, who were born in September of 2006. Dylan was born with idiopathic congenital primary bilateral lower body lymphedema. Ms. Ferguson’s advocacy for this cause began when her family’s insurance company refused to cover Dylan’s prescription gradient compression garments. In 2009 she worked with her State Representative, Tricia Cotham, who succeeded in introducing and passing the North Carolina “Lymphedema Diagnosis and Treatment Act”. This went into effect January 1, 2010, and mandates that all private and state policies issued in the state of North Carolina cover lymphedema treatment. Heather then set her sights on achieving nationwide coverage and in late 2009 secured her Congressman, Larry Kissell, as the sponsor for this federal Lymphedema Treatment Act. In order to most effectively support passage of this legislation and engage others across the country in lymphedema advocacy, she founded the Lymphedema Advocacy Group. “Our Story”, a video about Heather’s family, can be viewed on the Media page. (Founder and Executive Director, Lymphedema Advocacy Group)
Please contact Heather Ferguson with questions relating to this site or with queries as to how
you can help us ensure this legislation is passed into law: info@LymphedemaTreatmentAct.org
Michael Cannon (Chapel Hill, NC). I am the Product Manager for Lymphology for medi USA. I got involved with the Treatment Act because I thought that it was the right thing to do given my role in the industry. Since then I have wanted to stay involved because of what it means to patients first and foremost. This industry is about patient care and solving issues that they have. I am proud to be able to do what I can for lymphedema patients and the Treatment Act. I would like to encourage others to get involved in any way that they can. It is a great feeling when you are not looking for anything in return. (Treasurer, Lymphedema Advocacy Group)
Elaine Elgeman (Seattle, WA). I am a lymphedema patient advocate who volunteers with the NW Lymphedema Center to enhance patient education, create community and encourage self-advocacy. I know firsthand from 13 years with bilateral arm/hand LE the demands of complete decongestive therapy (CDT) needed to compensate for permanent damage to my lymph transport system from bilateral breast cancer treatments in 1999. My husband Daniel provides daily manual lymph drainage (MLD) and I wear prescription gradient compression garments every day. I am a Team Survivor NW hike leader where I encourage cancer survivors at risk for lymphedema to be active and to use trekking poles to keep lymph fluid moving. When I reached Medicare age, my insurance coverage for compression garments ended. After learning the hardships and disability faced by many thousands of Medicare seniors in the Pacific NW who are denied medically essential compression garments, I led a team from WA to the Lymphedema Lobby Days. When I returned from that life-changing experience, I began to expand my team of advocates for Medicare and state-level insurance for fellow lymphedema patients. I am grateful for the vision and support of the Lymphedema Advocacy Group in helping me pursue these lofty goals and am pleased to be a member of the board. (Chair, Lymphedema Advocacy Group)
Patti Graybeal (Johnson City, TN). I am a Licensed Orthotist with the State of Tennessee, ABC and BOC Certified Orthotic and Mastectomy Fitter, and I am very pleased to be a part of this team of advocates. I am married to my soulmate, Jerry, have 6 children, 10 grandchildren and 2 great grandchildren, am a Seventh Day Adventist, and I do my best to promote awareness for this disorder. As part of a third generation family owned business, I have fit lymphedema patients for many years with compression garments. In 2007 I lost one of my patients. First he was misdiagnosed and once finally properly diagnosed no treatment plan given. I along with his widow, we decided we needed to make a difference for others. We started a support group in Johnson City and host an annual Awareness Day. We went to Nashville and had state legislation passed to designate June 18th as Thomas Hovatter Lymphedema Awareness Day in Tennessee. I have lobbied in DC on two occasions for the Lymphedema Treatment Act and am so blessed to be a part of this group. (Board Member, Lymphedema Advocacy Group)
Jan Hasak (Paradise, CA) is a two-time survivor of breast cancer, who developed lymphedema in her left arm after axial dissection and radiation as part of her cancer treatment. Four months after the swelling she was treated with CDT, which has controlled her lymphedema for over a decade. Jan is a Reach to Recovery volunteer for the American Cancer Society, a patient-advocate for the NLN, author of two books on breast cancer and lymphedema, blogger and speaker. She advocates for the Lymphedema Treatment Act because she believes in the old adage, “An ounce of prevention is worth a pound of cure”: If Medicare covers the relatively modest cost of garments to prevent swelling, expensive hospital bills for cellulitis may be avoided. Her Web site is www.janhasak.com. (Vice Chair, Lymphedema Advocacy Group)
Jennifer Hovatter (Johnson City, TN). I am a lymphedema advocate in memory of my dear husband Thomas. Thomas passed away in 2007 from complications due to lymphedema because he couldn’t get the proper diagnosis, and when he finally got the proper diagnosis it was too late. He was only 43 when he passed away. When Thomas died, a part of me died too. In his memory, I am devoting the rest of my life to advocating for lymphedema patients. I am attending East Tennessee State University and will be majoring in Physical Therapy and Public Health and minoring in psychology and I will go on then to get my lymphatic therapy certification. My dream is to open a lymphedema clinic in memory of Thomas. I want to do whatever I can for lymphedema patients. (Board Member, Lymphedema Advocacy Group)
Tiffany Howe (Hampton, VA) I am a single mother of a beautiful eight-year-old daughter. I was born with Primary Congenital Lymphedema (Milroy’s Disease). After 27 years of struggling with this aliment, I came to a place in my life where I had to choose between losing my left leg or undergoing the Charles Debulking procedure. This was very challenging for me; I was faced with a very difficult decision to make. I chose to have the Charles Debulking procedure and words cannot express what a life changing experiences this was. My full recovery took a year, which included learning how to walk again. For the next five years, I educated myself on my disease by studying and researching any information that was available to me on general knowledge, management and care of lymphedema patients. My research brought me to the conclusion that there is a need for more support for lymphedema patients. I founded L.E.A.P. (Lymphedema Education and Advocacy Program) in Hampton, VA to help patients in my area. Lymphedema has caused many trials and tribulations in my life, some due to the lack of insurance coverage. The Lymphedema Treatment Act is important because I don’t want to see a patient suffer the way that I had to! (Board Member, Lymphedema Advocacy Group)
Carol L. Johnson, OTR/L, CLT-LANA (Chapel Hill, NC) is an Occupational Therapist with broad experiences in treating acute, critical, and chronic conditions. Her background as a Burn Therapist at the JayCee Burn Center in Chapel Hill, NC, lead her to develop a specialty in garment fitting and compression garment fabrication. She was a co-founder and President of a successful lymphedema clinic in Chapel Hill, NC and is currently the Chief Operating Officer of JoViPak Corp. with duties of product development, design, and technical service. She continues as an active lymphedema therapist in addition to being a patient advocate for the lymphedema population. She has advised on Insurance and Medicare legislative reform at both state and national levels. (Board Member and Medical Advisor, Lymphedema Advocacy Group)
Cynthia “MsCjay” Judge (Las Vegas, NV). I am a two-time breast cancer survivor, 1979 and 1993. I developed lymphedema in 1980, one year after my first modified radical mastectomy. It initially started with a swollen right arm and gradually developed in my right hand. My lymphedema went untreated until November 2009. Living with untreated lymphedema affected my self-esteem and overall health. As it is with most lymphedema patients, I suffered in silence, until a bout of cellulitis and a case of rigors sent my health spiraling. I ultimately found treatment and it was a life changing event for me, I discovered my true calling. I am an outspoken advocate for lymphedema patients and in 2011 I participated in the Lymphedema Lobby Days in Washington, DC. To help bring further awareness to lymphedema, I and my co-host Coach Christine (a breast cancer survivor with lymphedema) have an internet radio podcast “The Lymphedema Mavens” that serves as a forum for lymphedema suffers. (Assistant Secretary, Lymphedema Advocacy Group)
Jenny Sterner (Colts Neck, NJ). I am a lymphedema patient whose phlebolymphostatic edema is secondary to a condition I was born with, called Spina Bifida. In a nutshell, SB means I am paralyzed from the waist down with no sensation in my legs and some loss of bowel and bladder function. Because of my paralysis, I have no muscle “pump” in my legs to return the fluids to my circulation. My legs did not begin to swell noticeably until I was in my twenties. By the time I received treatment in 2007, I had reached Stage 2/3 lymphedema in both legs. I was in the hospital MANY times over the years with infections, some of which went to the bone. Had I been properly diagnosed much sooner, I could have been saved many years of heartache, and Medicare could have saved thousands of dollars in treating me. Medicare does not cover any of the compression devices I use on a daily basis and they are EXPENSIVE and I will need them for the rest of my life. Medicare does have an appeals process, but many patients are unable or unwilling to navigate the “system” on their own. I have won all of my appeals thus far, with the help of Bob Weiss, lymphedema advocate. I am involved with this Act as a way of “paying back” what has been given to me in the last several years. My dream is to see a day when no patient goes without proper diagnosis and treatment, and no patient has to struggle to afford compression garments and devices they desperately need. I will do anything and everything I possibly can to see this dream become a reality. (Board Member, Lymphedema Advocacy Group)
Kyle Weatherly (West Allis, WI) is the president of Solaris, maker of compression garments for people with lymphedema, venous disease, and wound conditions. Prior to coming to Solaris, he worked for Habitat for Humanity in California and Wisconsin. Kyle holds a masters degree in non-profit management and a Bachelors degree in history and political science from UW-Madison. Every day he sees patients who cannot afford garments to adequately treat their serious lymphatic conditions. For each patient Solaris is able to assist through their philanthropic efforts there are unfortunately many more who go without due to the current insufficient insurance coverage for lymphedema treatment. (Board Member, Lymphedema Advocacy Group)
Christine Wunderlin (Las Vegas, NV) I was diagnosed with Stage I lymphedema six months after my mastectomy in July of 2010. I had Stage I breast cancer and the doctor removed 11 lymph nodes none of which were cancerous. The doctor never said anything about lymphedema and the only advice he gave me was that I should never have any injections, IV’s or blood pressure taken on the left arm, the side of the mastectomy. Needless to say, I was pretty upset when I realized I had lymphedema – more so than losing my breast. I can always camouflage my left side by using a prosthetic, but there is no way to hide the swollen arm. I did a Google search to locate a treatment facility and came up with two in the entire state of Nevada – luckily both were in Las Vegas. One required a doctor’s referral and the other had a doctor on staff. I selected the one with the doctor on staff. It was a wonderful, supportive and enlightening experience – I had 7 weeks of treatment, wrapping, MLD massage, and subsequently wearing a compression sleeve. Compared to a number of patients I encountered at the Lymphatic Therapy Center, my personal case was very minor. What was appalling to me is that hardly anyone ever heard or knew anything about lymphedema, including my own healthcare professionals. Healthcare professionals and auxiliary groups such as insurance companies just seem to dismiss it – having the attitude that you should be glad that you’re still alive. I don’t believe that people should be ignored. Because of this, I decided to do something about it – getting the word out about lymphedema, starting a support group, educating people on lymphedema when they asked me about my sleeve, and starting a podcast called the Lymphedema Mavens (with my good friend Miss CJay) just talking it up. This is my goal and passion is to educate, inform, support, and advocate for people with lymphedema. (Secretary, Lymphedema Advocacy Group)
