Since its launch last year, our national chapter program has grown by leaps and bounds. We now have 25 chapters in 18 states! Check out the map above and visit our chapter page to join one near you. There are still a number of large gaps on the map. We are seeking volunteer leaders who… Read More »
Our chapter program is booming!
Legendary festival to support FSHD Society
A few years ago, James Partridge, a long-time FSHD Society member, decided to re-boot his career and pursue his passion for the blues. His home city of Ann Arbor, Michigan, had in decades past hosted a famed blues festival and he felt the call to resurrect it. Thus was born Ann Arbor Blues Festival version 2.0…. Read More »
TikTok to participate in World FSHD Day
TikTok, the video-sharing app formerly known as musical.ly, is the world’s fastest growing social networking platform. This year, TikTok is participating in World FSHD Day on June 20th. The relationship was cultivated by our friends at FSHD China. TikTok will be reaching out to Chinese pop stars and other celebrities, who will share a 15-second… Read More »
How to launch your own chapter or Walk & Roll
Have you thought about what you can do in your own backyard to serve FSHD patients and families in your community and advocate for greater awareness and resources to develop treatments? Look no further. Our community development team of Beth Johnston and Anna Gilmore walk you through the ABC’s of starting a chapter and Walk… Read More »
A surprise $50K gift
From a simple act of kindness When Jim Chin, chair of the FSH Society board of directors, donated funds for travel scholarships so that 20 patients could attend our 2018 FSHD Connect conference in Las Vegas, he had no inkling of the dividends his gift would yield. $50,000 to be exact. That’s the amount of… Read More »