FSH Society is a U.S. 501(c)(3) charity founded in 1991 by two FSHD patients, dedicated to funding scientific research and supporting patient education and outreach. The Society is the world’s largest grassroots network of patients, clinicians and researchers.
The Society established an FSHD research program when none existed, by recruiting scientists and advocating for FSHD research. The Society has funded more than $5 million in research grants, which have been leveraged to over $70 million in funding from the National Institutes of Health and other funding organizations.
Research grant applications are due on February 28 and August 31 of each year. Applications are reviewed by the Society’s Scientific Advisory Board chaired by Dr. David Housman of M.I.T. In addition to funding research, the Society assists research organizations and individuals with access to biospecimens, patient volunteers for research studies and travel grants. The FSH Society organizes an annual international research conference focused on FSHD research.
450 Bedford Street
Lexington, MA 02420
Daniel Paul Perez, CEO and President
June Kinoshita, Executive Director