fibromuscular dysplasia support, education & advocacy
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Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include dissection or aneurysm most commonly in the renal and carotid arteries, low bone density, joint laxity, degenerative disease in the spine, migraine-like headaches, dizziness, and tinnitus. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.

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About Us

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Sarah E. Kucharski, Chairman/CEO
An intimal fibromuscular dysplasia patient, Kucharski founded FMD Chat shortly after her diagnosis with the disease at age 31. She envisioned an international network of peer-to-peer connections for patients, caregivers and healthcare providers with the aim to improve the quality of life for those affected by FMD within this lifetime. Kucharski’s journalism degree from the University of North Carolina-Chapel Hill, master’s in liberal studies, and career in news writing, public relations and teaching has prepared her for a leadership role. She is a leader in the healthcare and social media community, serving on the ePatient Advisory Board for Stanford University's Medicine X, is a member of the Society for Participatory Medicine, and works as a consultant to healthcare companies seeking to improve the patient experience.

L. Elizabeth Bradey, Vice Chairman
Marketing, advertising and business analysis come as second nature to Bradey, whose background includes the news, pharmaceutical and insurance industries. Bradey also brings to the table a degree in communications and master’s in liberal arts with a concentration in global studies and economy from the University of North Carolina-Greensboro. She believes that success is earned through determination, ingenuity, resourcefulness and the willingness to fight. Her mission is to practice mindfulness when dealing with others, only impose direction when it will leave a positive effect, and encourage others to understand their own value through honest guidance to raise their own glass ceilings. Serving as FMD Chat’s Vice President is how Bradey has chosen to fight a war waged on her closest friend, FMD Chat’s founder. Bradey’s willingness to step in and serve in the absence of the Chairman shows to her nature to not just weather each storm but help navigate through it.

Travis Bumgardner, Secretary
Originally from Georgia, Bumgardner now lives in the Smoky Mountains of North Carolina with his wife, Sarah, three cats and a dog. Following a stint at Johnson & Wales University and work in the restaurant industry, Bumgardner regrouped and graduated with a degree in Advertising and Graphic Design. He has been with Smoky Mountain News for twelve years, earning multiple awards from the N.C. Press Association for his print and web work, and for the past five years he also has been the art director of the national magazine Smoky Mountain Living, of which wife Sarah is Managing Editor. The husband of a patient with FMD, Bumgardner works to balance normal life with the unusual demands that sometimes arise given his spouse's health history. Bumgardner chose to become involved with FMD Chat as a board member to help spread awareness of FMD, support the fellow patients who have come to mean so much to his wife, and, of course, serve as in-house designer.

Amanda Singletary, Treasurer
Singletary brings to the FMD Chat board her expertise in accounting, finance and human resources. She has more than nine years of experience managing the accounting department of a print media company that produces a variety of independent and contract publications for local and national distribution. Her primary responsibilities include: payroll, accounts receivables, business taxes and human resources management. Singletary studied business administration, holds a bachelor’s degree in sociology, and earned master’s degree in human resources from Western Carolina University. In 2010, she was inducted into the Pi Gamma Mu National Honor Society for maintaining a 4.0 GPA during her graduate studies. Singletary is a strong supporter of patient advocacy and rare disease research.

Rich Kucharski, Member
Kucharski has enhanced his retirement by joining FMD Chat—an organization near and dear to his heart as his daughter, Sarah, is the founder and CEO. A native of Illinois, Kucharski received his degree in economics from Bradley University, and after a brief stint as a middle school teacher, he went on to earn his law degree from Cornell University. Kucharski relocated to North Carolina for a position with the National Association of Attorneys General then moved into state government as an attorney with the Department of Correction and then as Assistant Attorney General in the Department of Justice. He spent 20 years at Western Carolina University as Chief Legal Counsel, during which time he also taught Constitutional Law and served as the Vice Chancellor of Technology Transfer. Over the years Kucharski has served on the boards of many non-profit organizations and is now vice-president of the Jackson County Community Foundation and Webster Enterprises, Inc., a medical device manufacturing industry providing jobs for individuals with disabilities or disadvantages.

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Medical Advisory Board


Dr. Larry Chu, Stanford University
Assistant professor of anesthesia with clinical focus on eHealth, and emerging technology and medicine; appointments include admissions committee for Stanford School of Medicine, web development for American Pain Society, and editorial board for MDnetGuide. 

Dr. Sharonne Hayes, Mayo Clinic
Associate professor of internal medicine and cardiovascular diseases and founder of Women’s Heart Clinic with research interests including SCAD, FMD, and use of social media in medicine; serves on board of directors for WomenHeart and awarded Women’s Day Magazine’s “Red Dress Award” for her work to improve women’s heart health.

Dr. Jacqueline Saw, Vancouver General Hospital
Interventional Cardiologist at Vancouver General  Hospital (VGH), with joint appointment at St Paul’s Hospital; Clinical Associate Professor of Medicine at the University of British Columbia, and Program Director of the Interventional Cardiology Fellowship Program at VGH; serves as the Head of VGH Cardiology Clinical Trials Research.

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Patient Advisory Panel


Anne Karmon, 2012-2014
Fran Saplis, 2013-2015
Dani Clarine-Rhodes, 2014-2016

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Affiliations


FMD Chat is a member of Global Genes, Rare Disease UK; and an associate member of EURORDIS, a non-governmental patient-driven alliance of patient organisations representing 544 rare disease patient organisations in 49 countries covering more than 4,000 diseases. FMD Chat works in partnership with Smart Patients, RareConnect, NeedyMeds prescription drug discount card program and the Coordination of Rare Diseases at Sanford registry program, which provides a free, online registry for all rare disease patients. FMD Chat is not affiliated with FMDSA.

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Policies

FMD Chat's bylaws are available to the public here.
FMD Chat's conflict of interest policy is available to the public here.