The Lymphedema Education & Awareness Project is an all-volunteer, 501(c)(3) nonprofit organization composed of patients, caregivers, and healthcare professionals. Lymphedema is a chronic disease that affects millions of Americans, including children. Our mission is to improve access to care for this underserved patient population through lymphedema education and awareness initiatives.
Heather Ferguson, Board President
Before the birth of her twin boys, Devdan and Dylan, in September of 2006, Ms. Ferguson had never heard the word lymphedema. Dylan was born with swelling that would later be diagnosed as primary lymphedema. Ms. Ferguson’s desire to advocate on behalf of lymphedema patients took root when she learned of the deficiencies in insurance coverage for the medically necessary compression garments used daily in lymphedema treatment.
In 2009, Ms. Ferguson began working with her State Representative, and, in an unprecedented four months time, succeeding in passing the North Carolina Lymphedema Diagnosis and Treatment Act. This state mandate requires that all private and state policies issued in the state of North Carolina provide coverage for comprehensive lymphedema treatment, including compression supplies. Ms. Ferguson then turned her efforts to improving coverage nationwide, and in late 2009 secured her Congressman as the sponsor for the first-ever federal Lymphedema Treatment Act. With the introduction of this federal legislation, it became apparent that an organization dedicated to improving insurance coverage for the treatment of lymphedema was needed. In 2010 Ms. Ferguson founded the Lymphedema Advocacy Group (LAG) in order to raise the awareness and support that would be necessary to move a bill through Congress.
After the Lymphedema Treatment Act was passed into law and the new coverage went into effect on January 1, 2024, it became increasingly apparent that lack of awareness and education was preventing many patients from accessing the treatment they needed and/or utilizing the new coverage available to them. To address these issues, Ms. Ferguson and other members of the Lymphedema Advocacy Group founded the Lymphedema Education and Awareness Project.
Amy Caterina, Board Vice President
Amy Caterina is an investor relations and corporate communications consultant in the biotechnology industry, providing investor relations, public relations, marketing communications and corporate communications consulting services. She is a graduate of Simmons College with a BA in International Business. Previously, Caterina served as head of Investor Relations for Genetronics Biomedical (now Inovio Pharmaceuticals) and Dura Pharmaceuticals (now part of Elan Corporation), as well as working in the financial services industry at State Street Bank & Trust and the Capital Group. As a consultant, she represented small to medium biotechnology companies, including RetroSense (now part of Abbie), Trovagene, Zavante, Sequenom among others.
In the nonprofit sector, Caterina served as President and board member on the Del Mar Education Foundation, the Canyon Crest Academy Foundation, and the Canyon Crest Academy High School Site Council. She also serves on the San Diego County Redistricting Commission and volunteers as a merit badge counselor for the San Diego-Imperial Council of the Scouting America (previously Boy Scouts of America). In addition to serving on the LEAP board, Caterina is also a board member for the Lymphedema Advocacy Group, a non-profit organization focused on advancing lymphedema care in the United States. Caterina developed lymphedema following cancer surgery and treatment.
Michael Cannon, Board Treasurer
Mr. Cannon is a long-time advocate for better access to care. For two years prior to the introduction of the Lymphedema Treatment Act and formation of the Lymphedema Advocacy Group (LAG), a board on which he also serves, Michael gave presentations to the Centers for Medicare and Medicaid Services (CMS), in an effort to gain coverage and additional codes for compression garments.
Michael has worked in the compression industry for over 25 years, primarily focused on lymphedema and patient solutions. As the Vice President of Lymphedema at Bauerfeind USA, he is currently developing a lymphedema program for launch in 2025. In addition, Michael is on the Board of Directors of the National Lymphedema Network (NLN), where he works on lymphedema programs and conferences. Michael is proud to have helped bring the Lymphedema Treatment Act to fruition and looks forward to continuing to support improved access to care for lymphedema patients.
Franci Schwab, Board Secretary
As the facilitator of a lymphedema support group, I have seen that a majority of patients that contact us have gone undiagnosed and without compression garments for years while their disease progressed needlessly causing irreversible damage and disability. I developed lymphedema after having breast cancer treatment. I too went undiagnosed for some time until I was approached by several members of the Lymphedema Support Group saying, “We noticed your arm from across the room and we think you’re one of us.” I was finally diagnosed by my oncologist after both my family doctor and my surgeon dismissed my concerns. It doesn’t have to be this way!
As a toolmaker I was fortunate to have excellent insurance through my union and therefore able to receive the care I needed including compression garments to manage my lymphedema. I became aware that this level of treatment is the exception. I am hopeful that my involvement with the Lymphedema Education and Awareness Project will help others get the care they deserve!
Jennifer Hovatter, Board Member
Ms. Hovatter became an advocate in memory of her dear husband Thomas. He passed away in 2007 at the age of 43, due to complications from lymphedema, because he did not get the proper and timely care that could have saved his life. By the time he finally received a lymphedema diagnosis, it was too late. When Thomas died, Jennifer feels a part of her died too. In his memory, she has devoted the rest of her life to advocating for lymphedema patients.
Jennifer attended East Tennessee State University, majoring in Public Health, and plans to get her lymphatic therapy certification. Her dream is to open a lymphedema clinic in memory of Thomas. Jennifer is a CNA at the VA hospital in Johnson City, Tennessee.
