Facioscapulohumeral Muscular Dystrophy is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and related to their FSHD.
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery.
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone.
We're In This Together...
During this time of uncertainty, we want you to know you are very much in our thoughts. Many of you already feel isolated. Now, because of the restrictions in place because of COVID-19 it is even harder to get out or for others to visit.
We care about what’s happening and its effects on our families. We are doing everything we can to help and strengthen the bonds of community. Together, we will get through this turbulent time.
Latest Blog Posts
This story about “coming out” with an FSHD diagnosis was first published in the 2014 summer issue of the FSH Watch newsletter. Its message is timeless. The #FSHDselfies campaign by Kelly Mahon Arlington, Virginia My hands were shaking and my stomach was doing somersaults. You can do it, the voice in my head said. I…
Our science team has often discussed the potential of therapies for facioscapulohumeral muscular dystrophy to address other conditions such as cancer, based on the biology of the disease. Now we have learned that losmapimod, currently in a Phase 2b clinical…
Upcoming Featured Events
Tim Hollenback, FSHD Radio host 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community....Find out more »