Meet Our Advocacy Team
Advocates with Congressman Kissell
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. “Our Story”, a video about Heather’s family, can be viewed on the Media page. (Lymphedema Advocacy Group, Chair)
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
Bob Weiss (Porter Ranch, CA) first became a lymphedema patient advocate after his wife Pearl, a 19 year survivor of breast cancer, was diagnosed with lymphedema. It was not, however, until five years after cancer treatment and the immediate onset of lymphedema symptoms, and after three cellulitis infections, before Pearl was correctly diagnosed with lymphedema and began receiving treatment. In the process of obtaining proper treatment for Pearl’s lymphedema he was astounded at the ignorance of this condition and lack of coverage for the recommended standard of treatment by Medicare and other providers and insurers. Through his lymphedema cost efficacy studies, he realized how much healthcare money could be saved through the proper treatment of lymphedema, and made it his life’s challenge to improve this situation. Mr. Weiss is a longtime patient advocate and serves as the volunteer chair of the National Lymphedema Network’s Insurance and Legislative Committee. He is the author of the original draft on which the Lymphedema Diagnosis and Treatment Cost Saving Act was based, and was involved in grassroots legislative efforts to bring lymphedema mandates to VA, NC, CA, NY, MA, GA and CT.
Please contact Bob Weiss with questions regarding Medicare policy as it relates to lymphedema coverage: Lymphactivist@aol.com
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. (Lymphedema Advocacy Group, Treasurer)
Jane Gregerson (Minneapolis, MN) is a long-time community advocate who developed bilateral lower-extremity lymphedema following gynecologic cancer treatment, including pelvic lymphadenectomy and radiation, in 2005. Her lymphedema requires daily compression; and she uses a variety of compression tools, bandages and garments, to control her lymphedema. Formerly a teacher, she serves as a director of the Minnesota Orchestra (sitting on its executive, finance, and governance committees) and a member of the University of Minnesota’s Masonic Cancer Center Advisory Board. Jane has also been a trustee of Lawrence University, Appleton, Wisconsin, and on the boards of Success By Six, a United Way program, and The Citizen’s League, a public policy organization in Minneapolis-St. Paul. Please contact Jane about advocacy efforts in Minnesota or to start advocacy for lymphedema legislation in your state at janepgregerson@q.com. (Lymphedema Advocacy Group, Vice Chair)
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. (Lymphedema Advocacy Group, Board Member)
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. (Lymphedema Advocacy Group, Board Member)
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. (Lymphedema Advocacy Group, Board Member)
Robin Miller(San Francisco, CA) has upper extremity lymphedema as a result of stage III breast cancer treatment at the age of 21, and is currently the Design and Development Coordinator for the National Lymphedema Network. “The diagnosis of lymphedema was much harder for me to accept than my cancer diagnosis. To me breast cancer seemed to have a starting point and an end point. Lymphedema, however, serves as an everyday reminder of what I have been through.” stated Robin in a recent Women & Cancer magazine article entitled The Lemonade of My Life. Yet she goes on to say “Despite the hardship, having lymphedema has become a blessing in disguise and has given meaning to my life. I am now officially a five-year survivor, and I find that helping others navigate their cancer and lymphedema treatment enables me to deal with my own reality.”
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. (Lymphedema Advocacy Group, Secretary)
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. (Lymphedema Advocacy Group, Board Member)
Pearl Hiat Weiss (Porter Ranch, CA) was born and raised on Manhattan’s Lower East Side, has Baccalaureate degrees from Brooklyn College and the Jewish Theological Seminary of America and has completed graduate studies in Educational Psychology at New York University. Pearl was a Teacher of English in the New York City Junior High School System and a teacher of Hebrew language in parochial schools. She was diagnosed with invasive breast cancer with 21/24 positive nodes in 1991. Intensive cancer treatment left Pearl with lymphedema. The first two of Pearl’s six lymphedema-related cellulitis infections were misdiagnosed, and her lymphedema was not diagnosed and treated until after three infections. Pearl has had the satisfaction of working with Bob on his lymphedema advocacy since 1996, helping lymphedema patients find treatment, support, and assistance with their insurance problems. Heather Ferguson was one of scores of beneficiaries of Bob and Pearl’s efforts when she contacted Bob for assistance in obtaining coverage for Dylan’s garments.
