Leadership
Meet our Board of Directors and Senior Management Team
Progress is driven by people united in purpose. With your unwavering support, the FSHD Society continues turning hope into action. This past year, we accelerated clinical trial readiness, launched groundbreaking initiatives, and ensured that the voices of individuals and families affected by FSHD remained at the heart of every milestone. From advancing research and expanding essential support programs to strengthening advocacy efforts, our community has come together to create real, lasting change.
None of this would have been possible without you, our dedicated supporters, advocates, and champions. Your generosity and commitment fuel every breakthrough. Together, we are making a lasting impact, bringing us closer to effective treatments and, ultimately, a cure. Thank you for being part of this journey and for changing lives in ways that truly matter.
Meet our Board of Directors and Senior Management Team
Expand & Deepen Our Community
Advancing Research
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 […]
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 […]
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