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.
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
A Gift You Give to Yourself! by Leigh Reynolds, FSHD Society Celebrating the holidays can be emotionally draining for many, but for those with a chronic condition like FSH muscular dystrophy it can be even more so. Add in a year like we’ve had – global pandemic, natural disasters, politics – and it is downright…
This month’s FSHD University webinar (video above) provided an outstanding, nontechnical explanation of magnetic resonance technology (MRI) and how it is being applied in the Fulcrum Therapeutics clinical trial of an FSHD therapeutic drug. Rosemary Shull of AMRA Medical…
Upcoming Featured Events
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT In this month’s FSHD University webinar, psychologist David Younger will teach you about one of his favorite mindfulness practices. It will help to demystify the concept of mindfulness so you can put it into action in your daily life in a...Find out more »
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac...Find out more »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Learning, discovering and testing: a researcher’s journey into FSHD Angela Lek, PhD, will share her scientific journey as an FSHD researcher. Her work is focused on understanding the molecular circuits Dr. Angela Lek that are perturbed in response to DUX4...Find out more »