The FSH Society is a nonprofit, patient-driven organization supporting research and education for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. Progress on FSHD could benefit a wide range of other areas of medicine, from cancer and diabetes to muscle regeneration and repair. We help patients and families through education and outreach; fund scientific research that is rigorously reviewed by our world-class Scientific Advisory Board; and advocate for increased government and industry investment in research and therapy development.
As long as we are here, no patient need ever face this disease alone. And with generous donations from patients, families, friends, major donors, and sponsors, the FSH Society will keep working to accelerate research leading to treatments.
Our Vision: To deliver treatments and a cure for FSH muscular dystrophy.
The FSH Society established an FSHD research program at a time when none existed, by recruiting scientists and advocating for FSHD research. The Society has funded over $6.85 million in research grants, which have been leveraged to over $94 million in funding from the National Institutes of Health and other organizations. Our efforts have resulted in:
Research initiated by the FSH Society led to the discovery of a specific genetic “package” called DUX4 associated with FSHD. An international team discovered a second gene, SMCHD1, that causes FSHD Type 2.
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Griff’s multi platform network offers a global consumer video destination available on multiple browsers including Roku, IOS and Android spotlighting premium video channels. Griff is honored to offer FSH’s own channel providing FSH’s global audience access to FSH content and events otherwise not available.
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Maria Calabrese, J.D. former CEO/Founder, MC Squared Entertainment and Ronnie Ward, former President Merv Griffin Entertainment, Co-Chair the Griffin Group have combined over a half century of entertainment industry experience including law, management, marketing and traditional tv/film production to form Griff Entertainment with one focus . . . to drive audience migration for online content creators who want to maximize their profitability and branch across all media.
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Figment LLC is headed by founder Barry E. Jackson and Patricia Doktor. Figment has provided production and/or concept design on many beloved animated features including “Nightmare Before Christmas”, “Shrek”, “Horton Hears a Who”, Ron Howard’s “The Grinch”, “Escape from Planet Earth”, and “The Ant Bully”. Figment’s work has received critical acclaim for “Firebreather” (Annie Award Nomination and Telly Award Win), for the animated short “Los Gringo”, for “Killer Buzz”, and for the current animated hit, “Sausage Party”.
Figment’s Barry E. Jackson also authored and illustrated the children’s book Danny DiamondBack, published by Harper Collins. Danny Diamondback is now a fully-funded feature film project, for which Figment will serve as Production Designer.
The FSH Society has been awarded Charity Navigator's Four-Star Award for the eighth consecutive year, ranking it among the top 2 percent of U.S. charities for exceptional fiscal performance and transparency. 87% of every dollar raised goes directly to programs serving FSHD patients and research.