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.
Click the button below to learn how we can support you on your FSHD journey.
Join Your Local Chapter
Archer Sverdrup is a young adult in their mid-twenties and serves as Co-Director of the St. Louis Chapter. They were diagnosed with Early Onset FSHD at age 10, with symptoms since birth. They are a full time powerchair user and use non-invasive ventilation due to the FSHD. Archer has been involved with the FSHD Society since diagnosis. They have a passion for advocacy and bettering the lives of all FSHD patients, with additional emphasis on helping to raise awareness about the complexities of Early Onset FSHD.
Outside of FSHD, Archer enjoys doing craft projects, playing videos games, and growing plants.
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.
October 14, 2026 | 6pm ET/5pm CT The Understanding and Practice of Emotional Well-Being We will consider the meaning of well-being, how we define it personally, and ways we can […]
English English 
العربية
Español de México
Français du Canada
简体中文
