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
Rebounding exercises
by June Kinoshita, FSHD Society At a recent Feeling Fit Zoom gathering, Cheryl Clulow, who had logged in from her home in Cape Town, South Africa, mentioned that she has derived a lot of benefit from “rebounding.” This was a new concept to me and I wanted to learn more. Rebounding, Cherly explained, is a…
Aiming to access fresh funding for FSHD research
We need YOU – to write to your senators by Anna Gilmore, FSHD Society Last year was an exciting one for our community as we launched our first FSHD Day on Capitol Hill! A small but mighty group of advocates…
Upcoming Events
Featured
Women On Wellness – personal care attendants and VA services
Zoom Virtual Meeting , United StatesFirst Wednesday of every month 4:00 pm ET | 3:00 pm CT | 2:00 pm MT | 1:00 pm PT This month, two of our members will share their experiences with hiring personal care attendants and researching potential help with the VA. Please come and join us as we learn more about these two very...
Wellness Hour – Artist Creativity Gallery 2025
Zoom Virtual Meeting , United States4:00 pm ET | 3:00 pm CT | 2:00 pm MT | 1:00 pm PT We are planning a special Wellness Hour event this month featuring art from our community members. We have 12 presenters and 62 examples of creativity/art to share with the community. We are starting one hour earlier than usual to make...
Everything Early Onset – Teen Talk 2
7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT We were so pleased the several teenagers with FSHD came to last month's teen talk. Meeting another person with FSHD is life-changing. Suddenly, you are not alone. We'd like to devote this month's meeting to teens again. If you are...
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.