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
Genetic testing for FSHD—a new frontier
There are exciting new developments in FSHD genetic testing. A new genetic test for FSHD is now being offered by PerkinElmer Genomics, a global company known for scientific and medical testing services. Other companies and groups are likely to follow suit. This is the first major innovation in FSHD genetic testing in nearly three decades…
FSHD Advocate on the Road to Clinical Trials
“Never give up, for that is just the place and time that the tide will turn.”–Harriet Beecher Stowe As we enter a new decade – one that we believe will see effective therapies become available – the families that form…
Upcoming Events
Feb
5
FSHD Society Radio with advocate Justin VanLanduit
Justin and his family at the Magic Kingdom. 9-10 pm ET | 8-9 pm CT | 7-8 pm MT| 6-7 pm ET Join host Tim Hollenback on Facebook Live for a chat with Justin TurfTank VanLanduit, who was diagnosed with FSHD in 2013 at the age of 33. "It was a blow to be told...
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South Carolina Chapter Launch
Join our new South Carolina Chapter Director, Frank Hanley, to celebrate the launch of this new FSHD Society Chapter! We would like to get to know one another, brainstorm future Chapter activities, and get updates from the FSHD Society. Anna Gilmore (Regional Director) will be on-hand to answer any questions you may have. For those...
Find out more »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 »
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).