Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
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.
Justen is 37 and was diagnosed with FSHD at the age of 13. He has three younger siblings who remain unaffected, and his mother also experiences FSHD, though to a lesser degree than he does. Living in Daytona Beach, Florida with his family, Justen is dedicated to his role as a Chapter Director. He is committed to raising awareness for FSHD and connecting individuals with the support they need—helping others understand exactly what they’re going through and contributing to the journey toward a cure.
Michelle is 36 and, along with her husband Justen, serves as a Chapter Director in Daytona Beach, Florida. As a devoted partner and parent to two children—Benjamen (8) and Ella (5)—she is passionate about raising awareness and connecting others affected by FSHD to a supportive community. Michelle believes that community fuels hope, and she is excited to help guide families through the challenges of FSHD alongside emerging medical advancements.
