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The St. Louis 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.
Marsha and her family were introduced to the world of FSH when her oldest child, who was 10 at the time, was diagnosed with the infantile form of the disease. With no family history of FSH, the diagnosis came as a complete shock. As a parent, Marsha wanted to do everything possible to help her child and joined the FSHD Society to find support and learn more about the condition.
Through the FSHD Society, Marsha found a caring community of people who offered both information and emotional support. Now, as the Director of the St. Louis Chapter, Marsha is grateful for the chance to give back to this community that has been so helpful and supportive throughout her journey.
Contact Marsha directly or visit the St. Louis Facebook page.
While Marsha 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.
St. Louis World FSHD Day Celebration 5:30-7:30pm at Hawk Ridge Park (Zachary's Playground) - 8392 Orf Road, Lake Saint Louis, MO 63367 You're invited to our upcoming picnic in celebration […]
