fibromuscular dysplasia support, education & advocacy
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About

TM
FMD Chat Board of Directors


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
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 GenesRare 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 PatientsRareConnectNeedyMeds 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.


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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.

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Blog Authors

AfternoonNapper, founder of FMD Chat, is a 32-year-old writer, reader, editor, teacher, cynic, comic noir, pragmatist, gardener, traveler, animal lover, wife, only child, foodie, sports fan prone to afternoon naps (or just naps in general). She lives with a long medical history including triple bypass surgery, a stroke that left her without pain or temperature sensation on her right side, loss of her left kidney, four cerebral aneurysms, a ruptured stomach, and an overall diagnosis of Intimal Fibromuscular Dysplasia, which is a rare type of the rare disease. She advocates for FMD awareness and engaging patients in their own healthcare.

FortunatelyFunny is a mama of two young boys, a wife, a shoe lover, a co-worker, a runner, a yoga lover and one undeserving Christian. She can be quite the chatty patty, seriously, and has the nerve to wonder where her son gets it from. Humor is a must for survival in her world. She includes laughing and making others laugh as a favorite pastime, along with making fun of herself. She is 35-years-young with a history of TIA/Stroke, pseudoaneurysms, and at least three dissections in her carotid and vertebral arteries. FortunatelyFunny was finally diagnosed with Fibromuscular Dysplasia (FMD) in 2010. Doctors are unsure which type of FMD she has, as there is no “string of beads," which is the hallmark of FMD's primary form. She also suffers from Chiari Malformation and a resulting Syringomyelia, which are brain and spine abnormalities. Though in pain often, dizzy a lot, and just sane enough to keep going, FortunatelyFunny looks completely “normal” and would fool the best of 'em!  She nonetheless considers herself fortunate to be walking, talking, living life, laughing, and advocating for FMD. Philippians 4:13

Heather Craven is partner to Matt and mother to their three children, Loren, 18, Cassidy, 14, and Devon, 7. Matt was diagnosed with FMD in November of 2010 after experiencing a seizure due to a stroke. His left kidney works at about 40 percent, his carotid arteries are quite a bit older than he is, and vertebral artery dissected, causing the stroke. Life was busy before the stroke and the diagnosis, life after these events is even more so. Heather writes from an observer's point of view in this bizarre illness that is sometimes a silent partner and at other times a screaming beast of demands.

JustJennifer is a 48-year-old teacher, writer, and mother of two who's engaged to a wonderful man who found her again after 25 years of being apart since college. (Now, there's a love story!) She's lived all over the U.S., from California to Maryland, and several states in between. In all that hopscotching across the map, she's enjoyed relatively good health other than a few issues here and there, about like anyone else with average health. When a recent collapse landed her in the hospital, she was mistakenly diagnosed as having a dissected internal carotid artery. Further tests revealed abnormalities on both carotid arteries resembling aneurysms, and this led to the current diagnosis of Fibromuscular Dysplasia (FMD). JustJennifer is now on a double mission, determined both to understand this disease that still baffles doctors, and to support others with the same rare, frightening, and often frustrating diagnosis.

MonkeyMugs is a 56-year-old female diagnosed with fibromuscular dysplasia in the upper internal carotid arteries and renal arteries in November 2011. Her family has a history of early coronary artery disease as well as diseases of the circulatory system. After visiting numerous specialists, MonkeyMugs feels her best source of information regarding FMD is peer-to-peer on sites such as FMD Chat.

WV Peaches was diagnosed with Fibromuscular Dysplasia in 2009. She had never heard of it before, but fortunately had a primary care doctor that was very thorough. She had been suffering for over a year with daily migraine, and avoided sunlight, noise and bright lights. The headaches continued to the point she could not work outside the home for about 14 months. Having been a bookkeeper and office manager for several years, this was a huge financial burden with no income. Her initial wakeup call came about November 2009 with a seizure that caused uncontrolled jerking of her body for about 30 minutes with intermittent tremors for the next few hours. She was at the ER for hours before being admitted, undergoing various tests including a MRI. Nothing concrete was noted and she was sent home the following day. She insisted that something was wrong, and she was referred to a neurologist that specialized in migraine. Unfortunately, the neurologist was dismissive and was only interested in giving pain meds and minimizing the symptoms. WVPeaches had some blood pressure irregularities during that time and finally her PC ordered a MRI of the head and neck where the carotid FMD was obvious. The doctor immediately sent her to an interventional radiologist and a vascular surgeon and the disease was then more thoroughly explained. An angiogram was performed, and it was discovered that the right carotid was totally occluded while the left was at about 50 percent. The right could not be stented due to the occlusion and risk of stroke; the left was determined to not yet require treatment. In May of 2010, WVPeaches separated from her husband and moved to Arizona. Since then, she has had to explain her disease to every medical professional that has treated her. She finds the most common misconception is that FMD is caused by arterial plaque. This summer she was referred to an interventional cardiologist who was not only familiar with the disease, but had treated FMD patients in his former practice, about which she is ecstatic.

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