Our eye-catching T-Shirts, totes and mugs feature the Bach 2 Bowie logo from the Ghostly Gala, our annual Los Angeles-based event to raise awareness and funds to fight FSH muscular… Read More »
Get our new Bach 2 Bowie T-shirt!
Search for Chief Executive Officer
The FSH Society is seeking a committed, experienced leader to serve as Chief Executive Officer (CEO). The CEO will lead the Society in meeting its important mission: to serve as… Read More »
Johns Hopkins Studies
Johns Hopkins and the Kennedy Krieger Institute are currently recruiting for two studies! Volunteering for studies like this helps provide researchers with the information they need to provide better treatments,… Read More »
Rare Disease Day at NIH
Frank Kolakowski and Manuel Gomez, FSHD advocates extraordinaire, were on hand to represent FSH muscular dystrophy at this year’s National Institutes of Health Rare Disease Day event. Thank you!
FSH Society’s first Open House!
The FSH Society is looking forward to seeing you! If you live in the New England area or even just happen to be visiting, we’d love to have you… Read More »