Our Impact

The FSHD Society is the world’s largest grassroots network of individuals with Facioscapulohumeral Muscular Dystrophy (FSHD), their families, and research activists. The FSHD Society, founded by patients Daniel Perez and Steve Jacobsen, helps people affected by FSHD through education and outreach, by accelerating scientific and medical research, and through advocacy efforts to increase government and industry investment in FSHD.