Ellen Feldman, filmmaker, created this documentary about a woman she met who has FSH muscular dystrophy. “Katy Kat in the Hat is a story about a woman who defies all odds after being diagnosed with FSH muscular dystrophy at the age of 21,” Feldman said. “Katy’s muscles may be weakening but her spirit becomes stronger. Despite… Read More »
We just received news that the FSH Society has earned its ninth consecutive 4-star Charity Navigator rating! We’re now in the top 1% of all U.S. charities! According to Michael Thatcher, President and CEO of Charity Navigator, “Only 1% of the charities we rate have received at least 9 consecutive 4-star evaluations, indicating that FSH… Read More »
Last month, FSH Society Ambassadors Carden and Spencer Wyckoff hiked through the Georgia portion of the Appalachian Trail to raise awareness and funds to cure FSHD. You can now watch their experience on WSB-TV Atlanta!
On November 11, the FSH Society honored four distinguished researchers and community members at its inaugural CureFSHD National Gala in Boston, Mass. The event, hosted by WBUR’s Morning Edition Host Bob Oakes, celebrated 25 years of progress toward finding a cure for Facioscapulohumeral Muscular Dystrophy (FSHD). The gala, which attracted more than 250 researchers, scientists,… Read More »
The evening of the CureFSHD Gala on November 11, 2016, in Boston, Massachusetts, was one of those magical moments when we were overcome with gratitude for the generosity, courage, and life-affirming energy of our community. Over 250 patients, families, researchers, doctors, and benefactors had gathered to celebrate the FSH Society’s 25th year. We premiered the… Read More »