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.
The Northeast Florida chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through.
We provide support, share local resources, and keep you informed on the latest research and care. Whether you’re newly diagnosed or have been living with FSHD for years, we’re here to support you, every step of the way.
Join your local chapter and learn how we can support you on your FSHD journey.
Christi Thissen is proud to be part of the local Northeast Florida FSHD chapter and is passionate about bringing people together. Diagnosed with FSHD in 1998 at the age of 19, she understands the challenges that come with the condition. Christi owns an IT Managed Services company in Jacksonville, which she runs with her big brother, who also has FSHD.
Through the chapter, Christi helps create a space where people affected by FSHD can share stories, exchange resources, and support one another. She believes that building a strong local community helps people navigate their journey with FSHD and allows them to connect with others who are facing similar challenges.
Contact Christi directly or visit the Northeast Florida Facebook page.
While Christi is powering the path forward, we’re always looking for passionate individuals to help with planning events, spreading the word, and working on other projects. Your involvement will make a big difference in growing the chapter and supporting those affected by FSHD.
Contact Beth Johnston, Chief of Volunteer Leadership to learn how you can make an impact and get involved.
