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
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
Upcoming Events
Apr
15
FSHD Radio Sequester Camp
CHANGE OF TIME TO: 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it’s important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on your mind. Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome…
Find out more »FSHD Radio Sequester Camp
CHANGE OF TIME TO: 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it’s important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on your mind. Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome…
Find out more »FSHD Radio Sequester Camp
CHANGE OF TIME TO: 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it’s important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on your mind. Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome…
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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