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
As communities everywhere take steps to reduce transmission of COVID-19, we would like to share some information provided by our panel of medical advisors. For most individuals with FSHD, the risk of serious illness from COVID-19 infection is the same as the general population. The CDC and MDA websites provide detailed information about who is…
Fulcrum Therapeutics Provides Business Update on Impact of COVID-19 CAMBRIDGE, Mass., April 2, 2020 – Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases, today provided a business…
Upcoming Featured Events
The 2020 FSHD Connect. hosted by the FSHD Society, is the largest biennial educational and networking gathering of FSHD patients and families, researchers, and clinicians.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 »