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).
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
Member of the team
Getting involved in research is about so much more than helping yourself by Jim Albert, Eldersburg, Maryland Patients who are new to research may be trying to decide if clinical studies are something in which they want to participate. They might wonder, Am I a good fit? Will this study benefit me? I hope this…
Dyne ramps up its FSHD program
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 Events
Mar
4
FSHD Society Radio with Julie Cohen, genetic counselor
Julie Cohen, MSc, genetic counselor 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 »Apr
1
FSHD Society Radio with guest Carden Wyckoff
Tim Hollenback, FSHD Radio host 6:00 PM ET | 5:00 PM CT | 4:00 PM MT | 3:00 PM PT Call-in number: (262) 422-6369 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...
Find out more »May
6
FSHD Society Radio with Lynn Stevens
Lynn Stevens 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....
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).