International workshop in November reaches consensus on a global FSHD patient registry. If you are an individual with FSHD, or a family member, you may have been asked to join a… Read More »
Global FSHD Registry Workshop
FSHD imaging study is recruiting volunteers
The Kennedy Krieger Institute is recruiting volunteers with FSHD for a clinical research study. Volunteers will be asked to undergo muscle strength testing and non-invasive magnetic resonance imaging (MRI) and… Read More »
Waking up your muscles with Lynnette Rasmussen
by Amy Tesolin-Gee, Midland, Michigan Several FSHD patients, family members, and FSHD-experienced clinicians came together in Ann Arbor on June 4, 2016, for an educational meeting including lots of helpful, informal… Read More »
Participate in our survey on the impact of FSH muscular dystrophy
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 »
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 »