History

What is the FSH Society?

The world’s largest grassroots network of individuals with FSH muscular dystrophy, their families, and research activists, the FSH Society was founded in 1991 by two patients, Daniel Perez and Steve Jacobsen. The Society helps people through education and outreach; funds scientific and medical research; and advocates for increased government and industry investment in FSHD.

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We are deeply grateful to Dr. Kohei Hamanaka and his laboratory for providing translations.