Join BetterLife FSHD Today!
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
A passion for adventure and advocacy
Don Burke recently completed a remarkable 93-day road trip, covering 28,000 miles across 36 states and four Canadian provinces in his electric vehicle. This journey is part of why he decided to retire early. “This trip was a bucket list adventure,” he said, “and it reminded me just how much is still out there to…
The fate of the Fulcrum Phase 3 data
This invaluable data is coming to the FSHD Society by Lucienne Ronco, PhD, FSHD Society When a clinical trial fails, what happens to the data? It may include hundreds of thousands of measurements—blood chemistry, images, performances on physical tests, answers…
Upcoming Events
Featured
Women On Wellness – Parenting with a disability
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 We're thrilled to welcome this month's guest, Marjorie Aunos, PhD, a psychologist, researcher, professional speaker, and consultant on accessibility and inclusion. She teaches organizations to solution-find and build environments that are accessible, inclusive, and welcoming...
Wellness Hour – FSHD and Family: A Blessing and… a Challenge
Zoom Virtual Meeting , United States5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Families are our primary social support groups and greatly influence how we live with FSHD. At the same time, every family is unique. In this conversation, we will discuss how our family dynamics affect our adventure with this chronic condition....
Everything Early Onset – Teen Talk
NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT Are you a teenager diagnosed with FSHD? We've been there and know how scary and lonely it can be. Here at Everything Early Onset, we want to be the person we...
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.