When my mother, Carol, was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) in the late 1950s, she was told she had only five years to live. As appalling as we find this today, knowing that most people with FSHD will live a normal lifespan, back then most physicians knew next to nothing about the condition.
Five years passed, and Carol noticed she was still very much alive. Years later, when the FSH Society was founded, it became part of our mission to make sure no patient ever goes through a similar experience. At the FSH Society, we researched facts about FSHD and provided accurate information, validated by our own experience as patients. For years, Carol was the voice on the phone for all who sought help and comfort. My mother passed away in 2012, but her spirit lives on in the Society’s mission to inform and empower all of us with FSHD.
Your desire to learn, engage, and support the Society’s work is why we have come so far. Our 2016 Donor Impact Report shows how the Society has invested your donations strategically, to push the field steadily forward toward treatments and a cure. The achievements stack up favorably compared to other areas of medicine that have hundreds of times more funding.
A group of generous benefactors values what the Society has accomplished and is determined to keep pushing the needle on FSHD research. Mary and Jim Albert, Kay Kitagawa and Andy Johnson-Laird, Bill Maclean, William Michael, Jai Narayan, Mike and Bev Rowlett, Allan Silverstein, and Larry and Madeleine Weinstein have joined our Matching Donor Circle. For our spring campaign, they will match your gift, dollar for dollar, up to a total of $50,000, if you donate by midnight, June 20—World FSHD Day. They want to step up and get to work, and they’re challenging you to do the same.
Your support has an impact. You inspire our staff, Board of Directors, Scientific Advisory Board, and volunteers to work tirelessly on your behalf. Your generous donation will keep us fired up. We thank you for your trust and confidence in the Society!
Daniel Paul Perez
President & CEO, FSH Society