Written by Howard Chabner, Board Vice Chair, and shared on behalf of the entire FSHD Society Board of Directors The Board of Directors of the FSHD Society is deeply saddened […]
While his family and our community morns the loss, I want to honor the life of Dan Perez, a man whose vision, determination, and heart changed the course of FSHD […]
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 […]
Author: Dr. Raymond A. Huml, Vice President, Rare Disease Strategy, Sciensus The Rare Trials Summit in Boston, held on September 9 & 10, 2025, was the inaugural event driven by […]
by Jenny Gast, National Director, Chapter Programs, FSHD Society What makes our chapter network so meaningful isn’t the size of the events, but the spirit within them. This summer, each […]
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