Extraordinary measures are woven into the fabric of the facioscapulohumeral muscular dystrophy (FSHD) community and the FSHD Society.
Thirty years ago, the FSHD Society was launched on the idea that we had to do something extraordinary to discover the cause and cure for FSHD. From our humble beginnings, we have taken extraordinary measures to expand the breadth and depth of FSHD research globally. We provided grants to dedicated researchers whose focused efforts resulted in many discoveries – including identifying and ultimately validating DUX4 as the genetic cause of the disease.
This is who we are. A community of committed individuals compelled to take extraordinary measures to fund the best science and initiate projects that will eliminate barriers to getting effective treatments to our families.
Together we empower an ever-growing community to magnify our efforts. We are playing an oversized role in eliminating the obstacles to clinical trial success while working to provide a regulatory path for therapies aimed at halting FSHD.
There are many ways you can get involved and play an active part in this work.
The Gift of Your Time, Talent, and Treasure
One of your greatest opportunities to increase awareness while funding progress is through participation in one of our Walk & Roll to Cure FSHD events. The 2021 event was a tremendous success, raising more than $678,000 for FSHD research and programs of patient support. Make plans now to join us in the fall of 2022!
And there are many ways to get involved beyond the Walk & Roll campaign...