Impact Stories

Ever since I have memory, my family watched the MD Telethon while praying for a cure for the FSHD that devastated my relatives. Each year my Grandmother, Father and many Aunts and Uncles became progressively weaker requiring more help and adaptive equipment.

Bill & Jann Maclean

My wife and I have been FSHD Society members for more than a decade. From the beginning it enabled interactions with people who share this rare disease. It also provided tips and techniques to more effectively manage it. Over the years the Society has expanded its mission well beyond communication with others. It has stimulated a growing number of scientists, physicians and organizations to focus on delivering a cure for FSHD.

David Younger, PhD

I was diagnosed with FSHD when I was about four, at the same time my mother and grandmother were diagnosed. The only symptoms I had at that point were that I slept with my eyes partially closed and a slight winging of my shoulder blades, but I was able to play sports like baseball, hockey, and tennis, and I was able to pretend that this mysterious illness was not my own.

Deborah Schwartz

I was clinically diagnosed with FSHD two years before the FSHD Society came into being. Mine is a spontaneous mutation. I always had winged shoulder blades and rounded shoulders and had started falling. As I knew no one who had this and there was no available research—this was before the Internet—I did what any normal person would do: I panicked.

Don Nemke

My name is Don Nemke and I am 75 years old. I have had symptoms of FSH Muscular Dystrophy starting 63 years ago and was formally diagnosed about 57 years ago. I’m currently in an advanced stage of FSH.

Jack Gerblick

I became involved with the FSHD Society because I wanted to be an active participant in the fight to find a cure, not just a spectator. I'm energized by being a strong advocate of the FSHD Society's mission of strengthening communities, raising awareness of the disease and finding treatments and a cure by 2025.

James (Jim) Chin, FSHD Board of Directors, Chair

In 1996 I attended the patient meeting in Boston along with my wife, Barbara. At the meeting, the President/CEO Dan Perez asked for help. I called Dan and expressed my interest in joining the Board of Directors (BOD). Later in the year, I was elected to the BOD.

Jeff Gibler

When I was a kid, we would come to the United States during the summer to visit my paternal grandparents in Houston. It was also when we got to do our annual visits to the dentist, and I, having been born cross-eyed and undergone three eye surgeries, got to see the eye doctor.

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