On June 20, we will celebrate the inaugural World FSHD Day to raise awareness for Facioscapulohumeral muscular dystrophy. Participants from across the globe, including individuals with FSHD, their families and… Read More »
Celebrate World FSHD Day on June 20
American Ninja Warrior features our Ambassador
Tune in on Wednesday, June 8, for American Ninja Warrior on NBC! The episode airing at 8:00pm ET / 7:00pm CT focuses on the popular show’s Atlanta trials and features Spencer… Read More »
Raising awareness on highway billboards
The state of Massachusetts has a program through which operators of electronic billboards must donate some space to nonprofits. We were able to obtain space by partnering with the Massachusetts… Read More »
The Power of 25 – Our Spring Challenge Campaign
This spring, we are launching our most ambitious annual campaign ever to mark this, our 25th year since Daniel Perez and Steve Jacobsen founded the FSH Society. Our goal: to… Read More »
Third Annual Songs in the Key of Steven Blier
June 24, 2016, 6:00 PM – REGISTER NOW! Grace Cathedral, San Francisco Please join the extraordinary pianist Steven Blier and baritone Theo Hoffman for a transcendent evening in one of San… Read More »