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…
Dyne Therapeutics, a Waltham, Massachusetts, biopharmaceutical company, announced yesterday that it is accelerating its FSHD therapy development program. Here is their press release: Dyne to evaluate therapies targeting genetic cause of FSHD under agreement with international research organization UMONS Leading…
Upcoming Featured Events
UPDATE: Our community’s health and well-being are our highest priority, and so due to the risks posed by COVID-19, particularly to people with FSHD, we have rescheduled the Voice of the Patient Forum for June 29, 2020, as an online meeting. Everyone who is currently registered will be automatically re-registering for the June 29 virtual...Find out more »
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 »
Dr. Anthony Romeo Join us for our webinar on scapular stabilization surgery at noon ET | 11:00 am CT | 10:00 am MT | 9:00 am PT. One of the classic symptoms of FSHD is "scapular winging." The muscles around the shoulder blade (scapula) weaken and allow the bone to jut out like an angel's...Find out more »