Meet Our Advocacy Team
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 access to care for the diagnosis and treatment of the disease. For this purpose we work to increase awareness of and education about Lymphedema amongst law makers, federal and state agencies, insurance providers, clinicians, and other relevant entities. We support attempts to improve insurance coverage and through both state and federal legislation, as well as though regulatory action and policy decisions, and encourage all members of the lymphedema community to become active participants in this process. The Lymphedema Advocacy Group is a 501(c)(4) nonprofit organization.
Heather Ferguson (Charlotte, NC) is the Founder and Executive Director of the Lymphedema Advocacy Group. Her relationship with lymphedema began with the birth of her twin boys, Devdan and Dylan, in September of 2006. Dylan was born with 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. Although a newcomer to the field of lymphedema, her background as a professional ballet dancer, teacher and choreographer provided pertinent expertise and accomplishments in goal-setting and personal and professional discipline, which have contributed to her remarkable success as a leader in lymphedema advocacy in the area of health policy. She is a recipient of the Lymphatic Education and Research Network’s Wendy Chaite Leadership Award, the National Lymphedema Network’s Legislative Excellence Award, and a graduate of the Lymph Science Advocacy Program.
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.
A Washington Post article about the struggle her family went through to get Dylan diagnosed and treated, and how that led her on the path to advocacy, can be read here; an interview with Heather can be read here; a short video entitled “Our Story” that chronicles her family’s experience can be viewed here; and the Lymphedema Treatment Act Public Service Announcement features why she became a patient advocate and the impact proper treatment has had on her son’s life and is viewable on our media page. Heather Ferguson can be contacted at: Heather@LymphedemaTreatmentAct.org
Sarah Bramblette (Biscayne Park, FL) is a patient with primary Lipedema and secondary bilateral lower extremity Lymphedema. She was diagnosed with Lymphedema in 2001, and Lipedema in 2004. Her initial diagnosis was delayed by years because doctors blamed weight for the size of her legs. Living with lymphedema for more than a decade, she learned to navigate the insurance approval process and advocate for herself in order to secure insurance coverage for her lymphedema garments and compression treatment from four different insurers. Her experience lead her to pursue a career in health administration, she earned her BS in Health Services Administration in 2009, and will complete her MS in Health Law in June 2015. She combines her personal story and knowledge of policy and law to power her advocacy efforts. Sarah was a member of the National Lymphedema Network LSAP class of 2014, and participated in the 2014 Lymphedema Lobby Days in Washington, DC. In October 2014, she appeared on The Doctors television show where she talked about her advocacy efforts for the Lymphedema Treatment Act and why the need for coverage of compression garments is so vital for patients. (Board Chair, Lymphedema Advocacy Group)
Michael Cannon (Chapel Hill, NC) is the Senior Manager of Clinical Services for mediUSA, a leading global manufacturer of compression garments. Its U.S. based campus is headquartered in North Carolina. Since 1920 the company has specialized in medical compression therapy by investing in research, education and innovation. Its product line includes compression, orthopedics, prosthetics, and foot care, enabling patients to manage chronic care challenges and enjoy life to the fullest. Michael is proud to be able to do what he can to support better care for lymphedema patients through his work with the Lymphedema Advocacy Group, and encourages others to get involved. (Board Assistant Treasurer, Lymphedema Advocacy Group)
Amy Caterina (Del Mar, California) is a ten-year cancer survivor with bi-lateral lower extremity lymphedema. She is a corporate communications consultant, avid volunteer, and recently established a patient led lymphedema support group in San Diego. Amy feels blessed to have survived cancer, and despite her own struggles with lymphedema she want to support other lymphedema patients who are not as fortunate. (Board Member, Lymphedema Advocacy Group)
Cindy Cronick (Osceola, WI). In 2007, Cindy battled aggressive, locally advanced breast cancer. By 2011, she had lymphedema in her left arm. As difficult as cancer was, lymphedema has in many ways been more difficult. Adding to the stress of daily management of a chronic health condition that compromises the immune system and the circulatory system, Cindy quickly learned that insurance coverage of medically necessary compression supplies was woefully inadequate for many and completely absent for those on Medicare. She became involved with the Lymphedema Advocacy Group to work towards a solution and has learned to advocate for herself as well as others. Cindy dreams of the day when every lymphedema patient has access to the compression supplies that they need and deserve. Cindy enjoys her advocacy work as well as her profession as a Pharmacist and she and her husband Jeff are the proud parents of two sons. (Board Secretary, Lymphedema Advocacy Group)
Debbie Crow (Oklahoma City, OK) was born with primary lymphedema in both lower limbs and diagnosed as a toddler. She is a nurse with 40 years’ experience in critical care and nursing education and recently earned a doctorate in Educational Psychology from Oklahoma State University. While in the doctoral program, she realized that only a few authors had published qualitative research about the experiences of young people with lymphedema or from a perspective that extended over time. Believing that there might be developmental implications relevant to educational psychology, she conducted a life history study about growing up and living with primary lymphedema. She was curious to learn how her experiences compared to those of the younger participants who emerged as adults when lymphedema was emerging as an important medical agenda and the internet was flourishing. Purposefully retired, she enjoys developing solutions for concerns illuminated by the stories of the participants, including the out-of-pocket expenses for decongestive therapy and compression garments. (Board Member, Lymphedema Advocacy Group)
Tiffany Detlefsen (Berne, NY). Tiffany’s daughter Emma was born with primary bilateral lymphedema. The difficulty in finding proper treatment along with Emma suffering from multiple bouts of cellulitis infections left their family with many questions and few answers. Through their fight to have Emma’s compression garments covered by insurance they discovered the LTA. They were astonished to see how many people were struggling just like them, but found it exciting to see people proactively trying to fix the same problems they faced for Emma. To Tiffany’s surprise, Emma came home from 2nd grade with a New Year’s Resolution written in class that read, “get the Lymphedema Treatment Act passed”… and the rest is history. Tiffany and Emma began traveling to D.C. with the Lymphedema Advocacy Group (LAG) in 2016, when Emma was just 6 years old. One of Tiffany’s greatest prides has been watching Emma grow to have the confidence to run her own successful congressional meetings and credits her amazing teachers, Heather and Elaine. Tiffany and Emma are committed to seeing this through, until the bill is passed. Tiffany is also Chair of the NY Chapter of Lymphatic Education & Research Network (LE&RN), where Emma is also a youth ambassador. They are eternally grateful for all the friends they’ve met through LAG and beyond proud of the work we all do, together. (Board Member and Patient Liaison, Lymphedema Advocacy Group)
Patti Graybeal (Johnson City, TN) is a Licensed Orthotist with the State of Tennessee, an ABC and BOC Certified Orthotic and Mastectomy Fitter, and is very pleased to be a part of this team of advocates. As part of a third generation family owned business, she has fit lymphedema patients for many years with compression garments. In 2007, Patti lost one of her patients to a lymphedema-related infection. First he was misdiagnosed, and once finally properly diagnosed, no treatment plan was given. Patti, along with his widow, decided to make a difference for others and promote awareness. They started a support group in Johnson City, and were successful in having state legislation passed to designate June 18th as Thomas Hovatter Lymphedema Awareness Day in Tennessee. Patti has attended every Lymphedema Lobby Days in Washington, DC to raise support for the Lymphedema Treatment Act, and feels blessed to be a part of this group. (Board Member, Lymphedema Advocacy Group)
Debbie Labarthe (Jasper, GA) is the grandmother of a congenital lymphedema patient. In March 2004, after a year-long search for an accurate diagnosis for her grandson’s chronic swelling in his right leg and pelvis since birth, Debbie was instrumental in having his case reviewed by a team of specialists with the Children’s Hospital of Boston. Carson was soon diagnosed with primary congenital lymphedema. This marked a turning point for Carson and the beginning of Debbie’s journey to learn all she could about lymphedema and provide support for Carson and other lymphedema patients. Within a month of Carson’s diagnosis, she discovered a local lymphedema support group, the Lighthouse Lymphedema Network in Roswell GA, joined their Board of Directors, and has served as the Secretary since 2006. She also serves on their Parent Networking Committee and administers the organization’s Facebook Group Page. Over the past 18 years with this support group, she has participated in annual lymphedema awareness/education conferences, fundraisers, lymphedema walks, and other events to support lymphedema patients and their families. In 2016, she also began her advocacy for the Lymphedema Treatment Act and joined the Georgia State Team with the Lymphedema Advocacy Group. She attended our annual Lymphedema Lobby Days in Washington DC from 2016 thru 2019; Carson joined her in 2016-2018, and her husband joined her in 2019. She continues to advocate for the LTA through emails, phone calls, virtual conferences, and Teletown Hall sessions. She vows to continue her efforts to encourage Congressional members to work together to see that the LTA is passed into law. (Board Member and State Team Manager, Lymphedema Advocacy Group)
Jamie Hart (Haverhill, MA) was diagnosed with breast cancer in 2006. Within a month of her first surgery she had lymphedema in her arm. Jamie’s medical team warned and prepared her for the possibility and immediately provided assistance and education on how to manage it. Subsequent reconstruction surgeries made the condition worse. She had two bouts of cellulitis despite taking care. Although Jamie is fortunate that her compression garments have been covered, an LTA brochure left at her physical therapist’s office informed her that coverage is not guaranteed for many. Jamie has since attended the past 3 Lymphedema Lobby Days and communicates and educates friends and family. A retired engineering manager (BSEE and MBA), Jamie is married and current president of a local non-profit charity. (Board Member and Lymphedema Stories Manager, Lymphedema Advocacy Group)
MJ Hitz (West Chester, PA) was treated for Hodgkins Lymphoma in 1983 and diagnosed with lymphedema in 2013. Thirty years after a biopsy of lingual lymph nodes, her left leg began to swell. It was the result of an infection from insect bites overwhelming an already compromised limb. Trying to find a positive with the new diagnosis lead her to the Lymhedema Advocacy Group. She joined her state team and attended Lobby Days in 2014 and 2016 in DC. She has channeled her frustration of what she can’t do about her lymphedema to what she can do – get the LTA passed. (Board Member, Lymphedema Advocacy Group)
Jennifer Hovatter (Johnson City, TN) became an advocate in memory of her dear husband Thomas. He passed away in 2007 at the age of 43 from complications due to lymphedema, because he couldn’t get the proper diagnosis. When he finally did get diagnosed 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 is attending East Tennessee State University and majoring in Physical Therapy and Public Health and minoring in psychology. Jennifer plans to go on to get her lymphatic therapy certification. Her dream is to open a lymphedema clinic in memory of Thomas. (Board Member, Lymphedema Advocacy Group)
Eric Johnson (Chapel Hill, NC) is the Director of Lymphology for BSN medical, a global leader in the manufacturing of products used to treat lymphedema, vascular conditions, wounds, fracture management, bracing and various other acute and chronic conditions. As the son of a lymphedema therapist, Eric knows firsthand the impact that lymphedema has on the lives of those diagnosed and those who provide care. Eric is pleased to offer his support and expertise to further progress LAG’s mission and most specifically to ensure that patients will have access to the standard of care they deserve. Eric is the proud father of five daughters (two sets of twins!) and received both his undergraduate and MBA degrees from the University of North Carolina Wilmington. (Board Member, Lymphedema Advocacy Group)
Naydza Muhammad (Natchez, MS) is an Occupational Therapist and Certified Lymphedema Therapist who also has May-Thurner Syndrome and associated left leg lymphedema. After becoming certified in lymphedema therapy she began to connect with groups and websites that would provide her with more information about lymphedema. Naydza found the Lymphedema Advocacy Group this way. The importance of the Lymphedema Treatment Act was so significant to her as a therapist and lymphedema patient. She saw daily how difficult it was for her patients to manage their lymphedema due to the cost of their necessary bandages and compression garments. Naydza felt deeply the need to help get the Lymphedema Treatment Act passed. She watched the webinars and downloaded all of the information and instruction which guided her to contact her local representatives and members of Congress. Naydza felt empowered by the instruction and guidance from Heather Ferguson and the members of LAG. She contacted her local Congressman’s office in October of 2014 and he sent one of his aides from Washington D.C. to sit down and discuss the Lymphedema Treatment Act with her. The meeting bore fruit and Naydza’s Congressman co-sponsored the bill! In 2017 she went to Lobby Days for the first time and met Heather Ferguson, Elaine Eigeman, and members of LAG from all over the country. So many people from different places with one common goal, resolved and committed to get the Lymphedema Treatment Act passed. It has been an amazing experience. Naydza is proud an honored to be a member of this team. (Board Member, Lymphedema Advocacy Group)
Dr. Said Nafai (Worcester, MA) was born and raised in Morocco. He received his Doctorate in Occupational Therapy (OT) from Boston University, USA. He is a professor of OT in the Master’s Program at the American International College in Springfield, Massachusetts. Besides teaching, he continues to work as an OT in a rehabilitation hospital and skilled nursing facilities. He is considered the “Father of OT in Morocco”. He founded and currently serves as the president of the Occupational Therapy Association of Morocco. He has presented worldwide about the distinct value of OT and known for his advocacy to promote OT worldwide and the ability to speak 4 languages. He was awarded by the American Occupational Therapy Association the 2020 “International Service Award” for his outstanding international work in promoting OT. He is a member of the GATE Community, a group that is part of the World Health Organization (WHO) that aims to improve access to assistive technology worldwide. He was invited in 2017 and in 2019 by WHO in Switzerland to participate in the Global Report on Assistive Technology. He is a certified lymphedema therapist. He brings students and healthcare professionals to provide rehabilitation services in Morocco (including the focus on lymphedema that they call in Morocco the “unknown disease”) and assistive technology training to Moroccans. (Board Member, Lymphedema Advocacy Group)
Lindsay Ryback (Milwaukee, WI) is the Product Manager for Compression Therapy products at L&R USA INC., headquartered in Wisconsin. The L&R Group has over 160 years of experience in research, education and manufacturing in the medical community, including compression therapy. Lindsay graduated from University of Wisconsin Milwaukee with a Bachelor’s Degree in Marketing and Human Resources, and joined the lymphedema community when she became the Marketing and Social Media Associate at Solaris. When Solaris was acquired by L&R, Lindsay was promoted to Product Manager and assumed responsibility of L&R’s complete compression portfolio, which includes world-class compression garments, bandages and wraps. In 2015, she attended the L&R Training Academy in Germany to further enhance her lymphedema, compression and advanced wound care training. Lindsay enjoys spreading awareness and education of lymphedema and compression therapy by working with lymphedema advocacy and support groups, lymphedema training schools and programs, patients, therapists and distributors. She is excited to be on the board for the Lymphedema Advocacy Group and to work with this expert team to support improved care and product coverage for patients. She also actively participates in the recently formed Wisconsin Chapter of the Lymphatic Education & Research Network. (Board Member, Lymphedema Advocacy Group)
Franci Schwab (New Carlisle, OH) is the facilitator of a lymphedema support group. The majority of patients that contact her support group have gone undiagnosed and without compression garments for years while their disease progressed needlessly causing irreversible damage and disability. It doesn’t have to be this way! Franci developed lymphedema after having breast cancer treatment that included axillary lymph node dissection. As a toolmaker, she was fortunate to have excellent insurance through her union and therefore able to receive the care she needed including compression garments to manage her lymphedema. Franci became aware that this level of treatment is the exception. She is hopeful that her involvement with the Lymphedema Advocacy Group will help others get the care they deserve! (Board Member, Lymphedema Advocacy Group)
Rebecca “Becky” Sharp (Jefferson City, TN) is a breast cancer survivor of eight years. Since she was only having a lumpectomy and sentinel node biopsy the word lymphedema was never mentioned. When Becky asked about lymphedema she was told she would not get it. Two weeks after MammoSite radiation treatment, her arm, breast, and trunk became swollen. It took two months of bandaging with limited results and a lot of internet searching to find out she needed to have CDT. Becky found a CLT-LANA who helped her, but by then her lymphedema was Stage 2. With several other patients Becky helped form a support group in Knoxville, TN – the Lymphedema Awareness Network of East Tennessee (LANET). They meet monthly and are working tirelessly to provide education, advocacy, and support. Becky has attended many conferences pertaining to lymphedema including the National Lymphedema Network (LSAP) and Lighthouse Lymphedema Network. She wants to see the Lymphedema Treatment Act passed and joined the LAG board to help in those efforts as much as possible. (Board Treasurer, Lymphedema Advocacy Group)
Judy Woodward (Dallas, TX) was born with lymphedema due to a vascular malformation called Klippel-Tiernaunnay Syndrome. Like many with lymphedema, she went untreated as a child and then undertreated for the next decade into adulthood, often hearing the phrase from doctors, “there is nothing we can do—you will just have to live with it.” Judy was fortunate, along the way, to find the National Lymphedema Network (NLN) and an MLD therapist in Dallas, where she received proper treatment and compression, opening up possibilities for an active life and future health. As a former Art Director in advertising, Judy volunteers for many creative projects — anything from prop building to choreography to graphic design. Along with her engineer-turned-entrepreneur husband of almost thirty years, they are raising two daughters, and enjoy travel and the arts. And, after years of MLD and compression, she is thrilled to now be playing tennis on a team. Judy’s life has been blessed, despite the struggles of lymphedema—it’s filled with faith, love and insight. She is a member of the NLN’s Lymph Science Advocacy Program (LSAP) and looks forward to employing her creative skills to solve problems and build awareness for the lymphedema community. (Board Member, Lymphedema Advocacy Group).
In Memoriam
Elaine Eigeman (Seattle, WA) lived with lymphedema for 20 years, after developing it as a result of bilateral breast cancer treatments in 1999. She was a driving force behind the Lymphedema Treatment Act since attending her first Lymphedema Lobby Days in Washington DC in 2011, and joined the Board that same year. Elaine served as Board Chair from 2014 until her passing in April of 2019. While she played a key role in working with our Congressional champions to raise awareness about lymphedema and the LTA, her favorite part was teaching others how to be advocates. In addition to her service with LAG, she volunteered with the NW Lymphedema Center and was a hike leader for Team Survivor NW, which served her well in walking (and running) the halls of Capitol Hill. Elaine will be greatly missed, but her spirit will live on in the many advocates she trained and inspired, and through passage of the LTA. (Chair Emeritus, Lymphedema Advocacy Group)
Bill McCann (Kansas City, MO) was diagnosed with Synovial Sarcoma at 23 years old. A rare and aggressive soft tissue cancer, which spread to his lymph nodes. Bill had several treatments and surgeries, including a cluster of lymph nodes being removed. 17 years later, he woke up in an Intensive Care Unit and was told he had Sepsis/Septic Shock due to Lymphedema in his leg. After a few years of adjusting to this new reality, Bill reached out to the Lymphedema Advocacy Group for education and hope. He thanks his local certified CDT therapists for teaching him how to manage the condition. He has experienced and heard the frustrating stories related to insurance coverage for essential medical supplies. Bill turned that frustration into a positive by becoming a volunteer advocate. He praises Elaine Eigeman’s determination and energy as extra motivation. Along with being a small business owner – Bill volunteers his time at a local homeless shelter, contributes to LAG’s Executive Committee and co-Chairs our Advocacy Training Committee. Meeting other advocates in DC for Lobby Days is always a highlight for Bill. He looks forward to seeing the day all Lymphedema patients have the opportunity to survive and thrive. Bill credits regular exercise, the golf course, disciplined self-care, great friends, and supportive family as the foundation to a positive outlook. He was thrilled to be able to see the Lymphedema Treatment Act become law, and lives on in the hearts of those who knew and admired him. (Vice Chair Emeritus, Lymphedema Advocacy Group)
Lois Tiemann (Chicago, IL). After years of suffering from edema, Lois was finally diagnosed with primary lymphedema in her lower extremities. As a person who believed in being the CEO of her own care, during her research of the condition she came across the Lymphedema Advocacy Group and the Lymphedema Treatment Act. Lois’s advocacy was an excellent example of what one could do without leaving home or home district. While her health kept her from traveling to DC, her work helping us maintain organizational documents and communicating with Rep. Schakowsky were equally important and effective in helping to pass the LTA. As a constituent of Schakowsky, Lois met with the Congresswoman personally at her district office. Her contributions to our organization and to the lymphedema community will be greatly missed. (Board Member Emeritus, Lymphedema Advocacy Group)
