Educate Yourself
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.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us.
Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Education is our Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy.
The inspiration for FSHD-U emerged from the success of Sequester Camp, the weekly program launched by the FSHD Society team when the Covid-19 pandemic forced widespread social distance. These activities are aimed at supporting the community in taking care of physical and mental health during this stressful time, while also feeding the collective hunger for more information and knowledge about research.
Latest Blog Posts
Tips and tricks: Pencil grips
If you’re hand grip has weakened, here’s a product that could be helpful. Originally designed to help children grip a pencil properly, these pencil grips are manufactured from soft silicone with perforations to keep your skin comfortable. The manufacturer states that this “pencil gripper can be used by children, adults or the old with arthritis…
ReDUX4 clinical trial update
In this video, Diego Cadavid, MD, Senior Vice President, Clinical Development, at Fulcrum Therapeutics provides an update on ReDUX4, the Phase 2b clinical trial currently underway testing the safety and efficacy of losmapimod to treat facioscapulohumeral muscular dystrophy (FSHD). The…
Upcoming Events
Jun
29
Voice of the Patient Forum for Drug Development
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 »Jul
1
FSHD Society Radio with Molly White of Dyne Therapeutics
Tim Hollenback, FSHD Radio host 12:00 PM ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM 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 »FSHD Society Radio on the ADA 30th anniversary
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. Mark your calendar. Invite your friends...
Find out more »
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us. Your participation is vital to creating a world free of the suffering caused by FSH Muscular Dystrophy (FSHD).