Meet Our Advocacy Team

Lymphedema Treatment Act ButterflyThe 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. Our primary objective at this time is passage of the Lymphedema Treatment Act.
The Lymphedema Advocacy Group is a 501(c)(4) nonprofit organization.

 

Heather Ferguson HeadshotHeather 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 headshot Sarah Bramblette (Portsmouth, Ohio) 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 Secretary, Lymphedema Advocacy Group)

candace-bridgewaterCandace Bridgewater ( Fernandina Beach, FL). Candace’s breast cancer experience nineteen years ago was resolved very simply compared to many of her “cancer sisters”. However, the combination of axillary dissection and radiation lead immediately to lymphedema and complicated her life. Lymphedema solutions were sketchy in Jacksonville, Florida then, but another patient encouraged Candace to “learn and become involved.” This suggestion led her to join the National Lymphedema Network. Participation in their Lymph Science Advocacy Program (LSAP) helped Candace form and lead an eight year lymphedema support group. When she learned about the Lymphedema Advocacy Group’s steps toward passing the Lymphedema Treatment Act, Candace immediately got involved. She has traveled to Washington, DC for Lymphedema Lobby Days several times, and as the leader of LAG’s Florida Team, Candace has been instrumental in securing the cosponsorship of numerous FL members of Congress. (Board Member, Lymphedema Advocacy Group)

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Michael Cannon (Chapel Hill, NC). Michael 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 Treasurer, Lymphedema Advocacy Group) 

cindy-cronickCindy 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 Member, Lymphedema Advocacy Group)

Pat Egan HeadshotPatricia Egan (San Francisco, CA). As a third-generation primary lymphedema patient, Pat understands the frustrations of trying to find answers and treatment for this troublesome condition. A friend in high school signed her yearbook, “Remember me when your ankles swell.” She has not forgotten how her mother and grandmother suffered as the complications of Milroy’s disease and circulatory problems progressed. Her sister helped her find the term, “lymphedema,” which lead her via the Internet to the National Lymphedema Network (NLN) and the Lymphedema Advocacy Group. In 2014, Pat was selected to join the Lymph Science Advocacy Program at the NLN international conference in Washington, D.C., followed by the Lymphedema Advocacy Day on Capitol Hill. As an active member of the California State Team, she joined with others to walk the halls of Congress to make the case for passage of the Lymphedema Treatment Act. Pat promises to work tirelessly for the recognition of lymphedema and the availability of treatment.  (Board Member, Lymphedema Advocacy Group)

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Elaine Eigeman (Seattle, WA) is a lymphedema patient advocate who, in addition to serving as the Board Chair for the Lymphedema Advocacy Group, volunteers with the NW Lymphedema Center to enhance patient education, create community and encourage self-advocacy. She knows know firsthand, from 13 years with bilateral arm/hand LE, the demands of complete decongestive therapy (CDT) needed to compensate for permanent damage to her lymph transport system from bilateral breast cancer treatments in 1999. Elaine’s husband Daniel provides daily manual lymph drainage (MLD) and she wears prescription gradient compression garments every day. Elaine is a Team Survivor NW hike leader where she encourages cancer survivors at risk for lymphedema to be active and to use trekking poles to keep lymph fluid moving. When she reached Medicare age, her 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, Elaine led a team from WA to the 2011 Lymphedema Lobby Days.  When Elaine returned from that life-changing experience, she continued to expand her team of WA state advocates and deepen her involvement with the Lymphedema Advocacy Group.  (Board Chair, Lymphedema Advocacy Group)

Patti Graybeal HeadshotPatti 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)

Julie Hanson HeadshotJulie Hanson (Dubuque, IA) has been a pediatrician in eastern Iowa for 14 years. She always counted herself among the very fortunate that their only child was seemingly entirely well. That changed when their daughter developed primary lymphedema at age15. It took months to diagnose, as the conditions rarity was extreme. After her diagnosis, Julie wanted to know all that she could about lymphedema, and sought and obtained training and LANA certification as a lymphedema therapist. Her family’s experience with lymphedema has brought in to sharp relief the shortcomings of lymphedema care in the United States. Their out of pocket expenses have been impressive and would be insurmountable for most suffering with lymphedema. It is this inequity and the maddeningly poor state of care for lymphedema in the US that motivates Julie to be a part of the Lymphedema Advocacy Group. At a bare minimum, patients with lymphedema must have coverage for proper compression. This is the first step in a long line of improvements, which lymphedema patients and their families deserve. (Vice Chair and Medical Advisor, Lymphedema Advocacy Group)

mj-hitz-headshotMJ 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 HeadshotJennifer 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)

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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. As one of the newest members of the Lymphedema Advocacy Group, 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)

Adrien MacKenzie headshot Adrien “Adie” MacKenzie (Nashville, TN) has over 30 years of experience in massage therapy, and she has been a Physical Therapist Assistant at the Vanderbilt University Medical Center’s Dayani Center, a Medical Fitness Center, since summa cum laude graduation from PTA school in 2009. Originally from Los Angeles, massage clients have included film & television stars along with world-class athletes, musicians and record producers; her work is praised in both Naomi and Wynonna Judd’s autobiographies. Moving into Physical Therapy was a natural progression of her dedication to the wellness and quality of life of those she works with. Shortly after completing treatment for breast cancer in 2010, Adie trained at the Academy of Lymphatic Studies and added certification in Complete Decongestive Therapy for Lymphedema to her specialties; she is a founding team member of the Vanderbilt Lymphedema Therapy Clinic. At both of the most recent bienniel National Lymphedema Network Conferences in 2012 and 2014, she was honored to be selected to present case-study posters. In 2014, she joined the Lymphedema Advocacy Group in Washington D.C. for their lobby days, reporting that she was energized and exhilarated at the opportunity to share her passion for this cause with legislators, exercising one of the great rights of American citizenship, the freedom to speak and advocate for change.  (Board Member, Lymphedema Advocacy Group)

musone head shot 2 Tom Musone (Cuyahoga Falls, OH) is the Director of Marketing at JUZO.  With JUZO since 2004, he is passionate about helping people who suffer from venous and lymphedema disease encouraging them to keep moving for a healthier, more active life. Before joining Juzo, Tom worked at various advertising agencies on a wide range of diversified regional and national accounts such as Florida State University, Green Mountain Energy and HR Block. Tom obtained his BA in Marketing from Gannon University in 1992 and a MBA in 1996.  He and his wife, Halle, reside in Hudson, Ohio. They have two children and the family is very involved in a variety sports and community activities. (Board Member, Lymphedema Advocacy Group)

Jill Ryan HeadshotJill Ryan (Louisville, TN) was a Human Resources Director/Consultant/Recruiter for 15 years, followed by 14 years at her dream job being a Flight Attendant for Delta Airlines. Just 43 days after Jill’s retirement in Nov. 2008, she was diagnosed with vulvar cancer, the treatment for which caused her “Bermuda Triangle of Lymphedema” (created by a previous hip to hip hysterectomy scar and now the 2 scars created by the surgical removal of all of my inguinal lymph nodes.) After her cancer diagnosis, surgery, complications and recovery, she never developed “Why ME?” syndrome. It became apparent to me early on that my purpose was to educate women to be much more aware and in touch with their bodies. To trust their own instincts and intuitions and ACT when something was different for YOU. I participate in the ACS’s yearly Relay for Life. I consider myself a VICTOR not a victim of cancer and I do not “suffer” from lymphedema, I’m a lymphedema patient. And now, I am proud to be a member of the Lymphedema Advocacy group board, and the TN State Team Liaison. As one of my fellow board members so aptly put it, this is our way of giving back. It is our dream to see the day when no patient goes without a proper diagnosis and treatment, or has to struggle to afford the medically necessary compression garments and devices they desperately need. (Board Member, Lymphedema Advocacy Group)

Lindsay Ryback headshotLindsay 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)

Becky Sharp HeadshotRebecca “Becky” Sharp (Jefferson City, TN) is a breast cancer survivor of three 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 Member, Lymphedema Advocacy Group)

Lois Tiemann headshot Lois Tiemann (Chicago, IL). After years of suffering from edema, Lois was finally diagnosed this year with primary lymphedema in her lower extremities. As a person who believes in being the CEO of her own care, during her research of the condition she came across the Lymphedema Advocacy Group (LAG) and Lymphedema Treatment Act.  Lois is on disability and Medicare, and felt that the mission of LAG was one that she was compelled to be involved with. She first joined the Illinois State Team, and later the Board of Directors. Lois believes strongly that awareness and education needs to be increased, not only for patients, but the medical community and country as well. In her case, as it is for so many other patients, disease progression led to comorbidity, resulting in higher healthcare costs for her and the healthcare system. Thus, Lois is passionate about advocating for insurance coverage of the compression supplies that are vital for managing lymphedema. She has both a Bachelors and Masters in Social Work and has served on many boards, including non-profit. Lois also brings to the LAG board experience in counseling, data management, marketing and organizational development. (Board Member, Lymphedema Advocacy Group)

Judy Woodward headshot 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).