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.
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To contact us directly, please email:
DaytonaBeachChapter@fshdsociety.org
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Please join us! Simply fill out the form in the sidebar to become a member of the Daytona Beach
Upcoming Events
Mar
4
FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out more »Apr
1
FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out more »
Voice of the Patient Forum for Drug Development
This meeting is the FSHD Community’s forum to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will be submitted to the FDA’s Division of Neurology Products, Office of New Drugs, for inclusion in the framework used to evaluate future FSHD therapies. Your views carry great weight with the agency when it considers whether…
Find out more »
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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