We are excited to share with you a survey containing questions to help researchers better understand the impact of FSHD on patients and caregivers. The survey was developed collaboratively by… Read More »
Participate in our survey on the impact of FSH muscular dystrophy
2015-2016YTD Donor impact report. 25 years of transformation
Our 2015-2016YTD Donor Impact Report is out! We urge you to read it to appreciate the incredible impact your support has had, and will continue to have into the future…. Read More »
2016 FSHD Patient Connect Conference
The FSH Society’s 2016 Patient Connect conference was held on Friday, November 11, (noon to 5:00PM) and Saturday, November 12, 2016 (9:00-5:00 PM) at the Westin Copley Place Hotel in Boston, Massachusetts…. Read More »
Acceleron’s ACE-083 clinical trial is now open
Cambridge, Massachusetts-based Acceleron Pharma, Inc., is now recruiting adults with FSH muscular dystrophy for a Phase 2 clinical trial of ACE-083. The initial trial site is located in St. Louis,… Read More »
Living with FSHD: Katy Kat in the Hat (Video)
Ellen Feldman, filmmaker, created this documentary about a woman she met who has FSH muscular dystrophy. “Katy Kat in the Hat is a story about a woman who defies all… Read More »