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 […]
In October, the FSHD Society launched Living Spiritually with FSHD, a new Gathering Place that welcomes anyone exploring how faith, spirituality, and a sense of meaning intersect with life with […]
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 […]
Updated Sept. 29, 2026 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 […]
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, […]
English English 
العربية
Español de México
Français du Canada
简体中文
