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
Connecting to others is essential to your health
Friendships are built intentionally by Gregg Lichtenstein, Margate City, New Jersey The 1970s band Three Dog Night proclaimed that “One is the loneliest number that you’ll ever do.” For all of us, particularly those with a challenge like FSHD, it is all too easy to relate to this song – unless we establish strong relationships…
Fulcrum Therapeutics and Sanofi to collaborate
Sanofi receives exclusive rights to commercialize losmapimod in all territories outside the U.S.; Fulcrum retains full U.S. commercialization rights Read the full news release here CAMBRIDGE, Mass., May 13, 2024 (GLOBE NEWSWIRE) — Fulcrum Therapeutics, Inc.® (Fulcrum) (Nasdaq: FULC), a clinical-stage…
Upcoming Events
Featured
Young Adults – About Kratom
Zoom Virtual Meeting , United States8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month we'll learn about kratom, a medical herb, from Young Adults group co-moderator Chandler Young. About himself Chandler says "I’m 23 and live in North Carolina, was formally diagnosed with FSHD at 16 but showed symptoms very early in...
Early-Onset Parent Roundtable – Heloise Hoffmann
Zoom Virtual Meeting , United States8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT CHANGE NOTICE: Instead of recapping Hill Day, we welcome our esteemed guest, Heloise Hoffmann. Heloise Hoffmann Our guest is Heloise Hoffmann, who will share insights about coping with the diagnosis of FSHD based on her personal journey from age 13,...
Feeling Fit with FSHD – Nerve pain and mobility, part 2
Zoom Virtual Meeting , United States18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This is part two of this month's series with Arielle Levy, a physical therapist who trained with Julie Herschberg (legendary in our community). Arielle will be discussing nerve mobility and pain. Postural impairments...
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.