Welcome to the Daytona Beach Chapter!

Thank you for visiting the Daytona Beach Chapter of the FSHD Society which officially launched in May 2019. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.

We hope to help patients, caregivers, and their families connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.

To contact us directly, please email:
DaytonaBeachChapter@fshdsociety.org

Don’t forget to follow us on FACEBOOK

Please join us! Simply fill out the form in the sidebar to become a member of the Daytona Beach

2024 Walk & Roll to Cure FSHD

Our 2024 annual Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated in helping raise awareness and funds toward reaching our goal of finding treatments and a cure for FSH Muscular Dystrophy. Fundraising will continue through the end of the year.

Learn more about the Walk & Roll to Cure FSHD here.

Stay tuned as we begin planning for our 2025 Walk & Roll to Cure FSHD!

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Michelle & Justen Ellis

JUSTEN & MICHELLE ELLIS

Chapter Directors

Michelle is 36, Justen is 37, and they have two children: Benjamen (8) and Ella (5). Justen was diagnosed with FSHD at 13 and has 3 younger siblings who are unaffected. His mother also has FSHD, but to a lesser degree than him. They live in Daytona Beach, Florida and are excited to embark as Chapter Directors helping to raise awareness as well as connecting others affected by FSHD to people who understand exactly what they’re going through. Community fuels hope and in conjunction with medical advancements we’re thrilled to work alongside you toward a cure.

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Are you not already a member of the Society? Sign-up via our new member form and get connected!