On March 25, 2026, Sarepta shared the following letter to the FSHD Community: Dear Members of the FSHD Community, We are reaching out today for the first time to briefly […]
في أكتوبر/تشرين الأول، أطلقت جمعية FSHD Society "العيش بروحانية مع FSHD"، وهو مكان تجمع جديد يرحب بأي شخص يستكشف كيف يتقاطع الإيمان والروحانية والشعور بالمعنى مع الحياة مع [...].
From diagnosis to Team USA, he keeps climbing By An Sasala, FSHD Society Johnny Quintana conquers challenges—and heights. A former football player and wrestler, Quintana regularly defies his doctor’s initial […]
Christine’s father was diagnosed with FSHD in his late 40s. Four years later he was reliant on a cane and, within ten years, a wheelchair. When Christine herself was diagnosed […]
by Chelsea Moeller, Development Director – FSHD Society Retiree Joanne Dalessandro has been busy – busier than she ever was during her 50-year career in sales. Between weekly medical appointments, […]
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