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

Get involved

When FSH Muscular Dystrophy impacts a family, they have one primary goal – to find treatments and a cure while living the best life possible. Currently there are no approved drugs to treat FSH Muscular Dystrophy, or FSHD, but at the FSHD Society, we are working hard to advance research, speed drug development, provide education and support, and build a connected community worldwide.

Activating the FSHD Community is essential to progress. 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.

There are a myriad of ways you can connect and get involved. Find the way that is right for you and your family!

Find Your Local Chapter

There is great power in community. Led by volunteers and supported by FSHD Society staff, the Chapter Program is our greatest opportunity to fund more research, connect more patients, and advance more progress.

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Check out our calendar of In Person and online events!

Advance Research

To crack the code of FSHD, patients are absolutely essential. Volunteer for research and your participation will without question help move us closer to treatments and a cure.

Start Helping

Raise Awareness

Increase visibility and understanding of FSHD to reduce the time to accurate diagnosis, increase empathy and understanding, and speed up research progress.

Start Helping

Join the FSHD Community

All around the world, there are families striving to live their best life with FSHD; connect in person and online.

Join the Family

Make a Donation

Your financial support fuels research that will bring treatments to families by 2025 while providing support services to families affected by FSHD.

Make A Donation

FSHD University

FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy. Education is your best investment in progress.

Enroll in FSHD U

Sign Up for TeamFSHD

Team up with others to change the world! Whether you join our Walk & Roll to Cure FSHD or plan your own event, together we’re making a difference for those living with FSHD.

Join the team

Ask your doctor

Since 2018, the international medical system has had a unique code (G71.02) for FSHD muscular dystrophy. Please ask your medical provider to add the code to your medical record. This enables researchers to analyze data on the public health impact of FSHD.

Learn more

World FSHD Day - June 20

Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day.

John Porter, Chief Science Officer of Myotonic Dystrophy Foundation, former program director at the National Institute of Neurological Disease and Stroke

“The FSH Society has made a light-years difference in the field—attracting and pushing investigators, facilitating wherever possible, and managing the big picture along with the small details.”

Tom M.

"I was happy to donate the tissue to help in some small way towards treatment, and hopefully someday, a cure."

Shanon B.

"I think we are all motivated to help find a treatment/cure. I also have a son with FSHD...so it's really for him!!"

Tim B.

"My biggest motivator to participate in clinical research is trying to make sure there is a treatment in case my kids end up having FSHD. My second biggest motivator....to get better myself! There are a lot of things I would love to be able to do with my family!"

Deborah S.

"If not us, then who?"

Deborah S.

"I will do whatever is asked to ensure that no one has to deal with FSHD again."

Susan F.

"My motivation is to help researchers to gain more knowledge of FSHD..the possibility of younger generations not having to go through all that I have."

Catherine R.

"I'm part of the MRI study and RESOLVE study. I'm very happy to give my time and body statistics for the good of the FSH community. The goal is to contribute to a future treatment or cure!"

Heather N.

"I chose to participate in the RESOLVE study for several reasons. First, I want anything and everything about this disease uncovered. My desire is that the medical community can eventually ensure decisive diagnosis, limit progression, and find a cure. I want the future for FSHD patients to be one that includes the possibility of regaining a smile that has been lost, lifting arms in celebration, and walking without the fear of falling."