Get Involved

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The FSHD Society is the largest network of patients, families, clinicians, researchers and friends - all advocating for FSH Muscular Dystrophy.

YOU are the driving force that enables the FSHD Society to support & empower families, and to fund groundbreaking research to find treatments and a cure!

Join us now by participating in an event, supporting a person/team at an event, or starting your own fundraiser!


Ways to Get Involved:


1. Find an Event near you to participate in, or to support or sponsor.

2. Create Your Own Personal Fundraiser: â€‹Donate your birthday, organize a hike, host a dinner-party, or just team up with friends to make a difference!

3. Donate to someone who is participating in an event, or make a gift to the FSHD Society. All donations help accelerate treatments for FSHD!

4. Facilitate a future Walk & Roll To inquire about holding a Walk & Roll in your community, please start by filling out our Event Information Form

5. If you are an FSHD patient, Volunteer for Research by donating tissue, enrolling in a registry, or joining a clinical trial.

6. Raise Awareness: Celebrate World FSHD Day (June 20th), get FSHD on TV, and share your story!

There are so many other ways to be involved - Check out our Website for more ideas, visit the Events Calendar for a full list of happenings, and keep up to date with all the latest research!

Thank you to all of our amazing volunteers and fundraisers! We can only accelerate treatments with your help!