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.
Latest Blog Posts
Julie Cohen, ScM, genetic counselor in the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute in Baltimore, Maryland, answers some commonly asked questions. Q. What is the genetic cause of FSHD? Let me begin by saying that the genetics of FSHD is quite complex! There are two types of FSHD, called Type 1…
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…
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 »