Our goal for all impacted by FSHD is two-fold: 1) Speed the delivery of effective treatments and a cure and; 2) Ensure those impacted have what they need to live their best life.

The FSHD Society has played a key role in the advancement of FSHD therapies and provides support to our community worldwide. Together, we're poised to reach more milestones in 2024.

Visit our Walk & Roll page today to see which Walk & Rolls are taking place this year and to get signed up for a Walk & Roll near you!

• Start fundraising today to earn fun prizes and make the biggest impact
• Invite your friends, family, and colleagues to join your team or make a donation
• Raise awareness by sharing your story and letting people know why you Walk & Roll

We hope you’ll join us this Fall to celebrate our community and, together, move us closer to a cure!

BetterLife FSHD is a pioneering research platform dedicated to empowering people living with Facioscapulohumeral Muscular Dystrophy (FSHD).

As FSHD research advances, and more therapies are being developed, it is more important than ever for patients to be actively involved in research, in their own care, and in advocacy. By joining BetterLife FSHD, your voice becomes part of a powerful story.

You're not just managing your FSHD: you're paving the way for a better future for everyone affected.

Have a question, but you’re not sure who to ask? Ask the FSHD Navigators and get connected with a real person. We are here to journey alongside you and give you the resources you need to live your best life with FSHD! Just email us at Navigator@FSHDsociety.org, call 781-301-6060 x4000, or submit a question.

FSHD Radio: Straight Talk releases episodes on the second and fourth Tuesday of every month. These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.

You can watch the show on YouTube @FSHDSociety or Facebook @FSHDSociety, or listen at your convenience wherever you like to stream your favorite podcasts.