Why I made the FSH Society a beneficiary in my will

Because if not us, then who?

by Deborah Schwartz, New York City

I was clinically diagnosed with FSHD two years before the FSH 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.

Carol invited me and my father up to Lexington, Massachusetts, to a conference. As a friend who also attended that event recently recalled, “You were terrified, and your father was not much better, and he was trying to be strong for you.” Carol spoke to both of us, and we felt much calmer afterward. I had found a place that was home. The emotional support was amazing.

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’ve seen incredible leaders rise through the FSHD community. When one passes, 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 FSH 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.

To learn more about joining the Legacy Circle through a planned gift, please visit https://www.fshdsociety.org/planned-giving/.

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