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[…] so much hope. Three years ago today, I was diagnosed with fascioscapulohumeral muscular dystrophy ( FSHD). It took me a long time to remember how to pronounce it, spell it, […]
A transformative force for the FSHD Society by June Kinoshita, FSHD Society Judy Seslowe, whose life was marked by compassion, leadership, and unwavering commitment, passed away on April 13, 2025 […]
[…] As a rare condition affecting an estimated 1 in 8,000 individuals in the general population, FSHD presents a challenge when it comes to gathering a critical mass of individuals who […]
Finding a way around all obstacles by June Kinoshita, FSHD Society One lesson Michelle Mellion, MD, absorbed from seeing patients at a Muscular Dystrophy Association (MDA) neuromuscular clinic is that […]
[…] taking placebo. This contradicts data from more than five years of natural history studies of FSHD, which have never shown an improvement in RWS in untreated individuals. The Phase 2 […]
