New York City
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.
I earned my living as a commercial designer. At 37, I could no longer hold a paintbrush or a pen. Then one day, my neurologist gave me a number to call. The FSH Society had just been formed, and I spoke to Carol Perez, one of the most remarkable women I have ever met.
I volunteered for a DNA study with Dr. Rabi Tawil at the University of Rochester. I turned out to have FSHD Type 2. Every time bodies are needed for research, I volunteer blood and guts, because if not us, then who?
I have seen incredible leaders rise through the FSHD community. When one passes on, another steps forward to take his or her place. We have a legacy of helping each other up.
I am eternally grateful to my father for giving me the financial means to take care of myself and to help others. The FSHD Society has supported me, so I have supported the Society. I have designated it as a beneficiary in my will, to ensure that there will be treatments for this disease. I want to make sure there will always be someone to help the next person up.