Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.
FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.
There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.
The FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.
Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
Education: A Patient's Best Weapon for Change
FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.
FSHD University is a place for you to gain knowledge, get connected, and find hope.
Latest Blog Posts
Step by step. Inch by inch
I have never met most of you, but you are all my village by Brian Jude Loiacono When I reflect back on my life playing all kinds of sports in the mid to late 1960’s, having muscular dystrophy was the farthest thing from my thoughts. The medical community was still evolving in its knowledge of…
The FACT Alliance
Progress through collaboration by Jamshid Arjomand, PhD, Chief Science Officer As a fan of home improvement shows, I’m fascinated by the evolution of going from an idealized dream home or floor plan to the ultimate result. Compromise is always a…
Upcoming Events
Featured
Women on Wellness – Estrogen & FSHD
Zoom Virtual Meeting , United StatesFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Loralei Thornburg, MD, professor of obstetrics and gynecology at the University of Rochester. She is a co-author of the pregnancy and reproductive medicine section of the forthcoming international care guideline...
Wellness Hour – Chair dance party
Zoom Virtual Meeting , United StatesDancing with differences: A Moving Celebration of the Season 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a joyous and energizing Chair Dance Party to celebrate the winter and holiday season. Bring your favorite libation and be prepared to shake, rattle and roll to dance...
FSHD Radio: Community Profiles
Facebook and YouTubeTuesday, December 12th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come. A new video...
We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.