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
Upcoming Events
Dec
7
Daytona Beach Chapter Meeting
We are excited to be holding our first member meeting as a new chapter! This is a friendly, confidential meeting where you can share and learn from one another about local resources, tips and tricks for coping with the physical and psychological challenges, and offer and receive support. There will be finger foods served. There is a nearby restaurant where we will continue socializing after the meeting, so feel free to bring your friends! “We hope to see you there!” – Justen & Michelle Ellis, Daytona…
Find out more »
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…
Find out more »
FSHD Radio – December show
Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM EST - topic TBD
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.
Stay Informed on Local Activities
Are you not already a member of the Society? Sign-up via our new member form and get connected!