Dear Friends, At the FSH Society, our moonshot is to get to a treatment for FSHD―an intervention that will slow or halt the muscle deterioration. We have set a target… Read More »
Project 2025
FSH Society Talk Radio Live Support Group!
Join us on March 28th, 9:00 PM EST / 8:00 PM CST for a live, on-air support group session with the regulars at Connecticut Connections, the FSH Society’s member group… Read More »
2018 FSHD Connect preliminary agenda
We’re excited to share with you the preliminary agenda for our 2018 FSHD Connect conference, where a coalition of patient and families, top researchers and clinicians, and advocates will gather… Read More »
Los Angeles FSHD Family Day videos
We are pleased to share these videos from our 2017 FSHD Family Day conference in Los Angeles, held on October 21, 2017. We are so grateful to Laurie Heyman and… Read More »
Knowing others who share your diagnosis makes you happier
Findings from major study of long-term disability We at the FSH Society have long believed that helping individuals and families with FSHD meet one another is one of the most… Read More »