The FSHD Society extends our support to the myotonic dystrophy community after the announcement that Novartis’ Phase 3 HARBOR trial of del-desiran in myotonic dystrophy did not meet its primary […]
The 2026 Walk & Roll to Cure FSHD season is about to start. We’re excited to create new memories and community connections during 26 events held across the United States […]
On July 29th and 30th 2026, our FSHD Communities came together once again for our summer Multi-Chapter Meetings. We host these meetings to provide our chapter members with a regular […]
By: Feng Kok, Kayleigh Worek For most people living with Facioscapulohumeral Muscular Dystrophy (FSHD), a genetic test is more than a lab result. It’s confirmation after years of unanswered questions, […]
By: Bill Sarraille, Wayne Winegarden, and Amanda Hill Living with facioscapulohumeral muscular dystrophy (FSHD) can affect nearly every part of daily life. A new study is the first to look […]
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