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…
Calgary 360 slides
Here are the slides from the Calgary FSHD 360 meeting on March 16, 2024. Welcome! What is a 360? What is the CTRN? Beth Johnston, FSHD Society, and Neil Camarta, FSHD Canada Fdn. FSHD 101 and overview Lawrence Korngut, MD,…
Upcoming Events
Featured
Texas FSHD 360
Allen R. Baca Center 301 W. Bagdad Ave. Building 2, Round Rock, TX, United States9:00 a.m. US Central Time doors open | 10:00-3:00 p.m. US CT conference sessions Save the date!! The FSHD Society, in collaboration with the University of San Antonio Health Science Center, University of Texas Austin Medical School, and University of Texas Southwest Medical School, is hosting our first-ever Texas FSHD 360 conference. Dr. Matthew Wicklund...
CarePartner Hour
Zoom Virtual Meeting , United States8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT 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 care partners (the term we...
Women On Wellness – Promoting a positive outlook
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 This month's discussion will focus on promoting a positive outlook. Staying positive can be challenging while one is dealing with uncertainty and experiencing emotional needs of lifestyle changes. How do we cope with the pain...
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.