by June Kinoshita During the month of June of this year, the FSHD community will enjoy the thrill of having one of its own lead an eight-person team in the… Read More »
Team FSHD Cycling eyes epic race in June 2017
Get our new Bach 2 Bowie T-shirt!
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 »
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 »
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 »