To crack the code of FSHD, patients are essential. Every breakthrough in FSHD has been made because patients and their family members got involved. We are hopeful that a treatment is within sight; your participation will move us closer to discovery.
FSH Muscular Dystrophy is highly variable, even among affected family members. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives, physically and mentally.
There is great power in community. Around the globe, individuals with FSHD are living proof of that. When we come together, each bringing our unique strengths to bear, we inspire each other to 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. Our webinars and other contents are designed to empower individuals to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide treasure troves of videos, articles, and resource lists, provided by the world's top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, make friends, and find hope.
Latest Blog Posts
Talking to my FSHD
by Haviva Ner-David Part II of excerpts from Dreaming Against the Current. I decided to talk directly to my disease. After thirty-two years, it was about time. “Are you willing to talk to me, FSHD? I know you are there.” “Yes.” “Can you tell me why you showed up in me, out of the blue?…
FSHD Canada Foundation awards $2.8 million to CTRN
by June Kinoshita, FSHD Society The FSHD Canada Foundation, a close partner and fellow traveler of the FSHD Society since its founders Neil Camarta and Craig Kelley first met in 2010 at the Society’s annual conference, announced it has awarded…
Upcoming Events
Sharegiver Hour – Mindfulness meditation
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Jennifer Egert, PhD Join psychologist and mindfulness instructor Jennifer Egert, PhD, to learn about mindfulness meditation and how to apply it in your daily life to improve your mental state. This monthly meeting is for those of you who are providing...
FSHD Univeristy – Physical therapy for shoulder dyskinesia
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Presented by Jos IJspeert, MSc, Radboud University Medical Center Jos IJspeert, Radboud University Medical Center Shoulder or scapular dyskinesia is one of the most common symptoms of FSHD. The muscles that normally stabilize the shoulder blade, or scapula, are weakened, and...
FSHD Radio: Hot off the Press with Jamshid Arjomand, PhD
Facebook and YouTubeThursday, January 27th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,...
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. Your participation is vital to ending the suffering caused by FSH Muscular Dystrophy (FSHD). There are many ways you can get involved and play an active role.