Welcome to the St. Louis Chapter!
Thank you for visiting the St. Louis Chapter of the FSHD Society! 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.
Our 2020 Walk & Roll has gone VIRTUAL! Please join us, and invite your family and friends from wherever they are to join us too!
We will "see" you on Saturday, September 12, 2020 - when all of our Chapters nationwide will join together!
Click the button below to register or donate!
All of our worlds have been highly impacted by the corona virus pandemic, yet our commitment to our families remains the same. This is why we must continue to move forward!
To get in touch with us, please email Chapter Director Marsha Sverdrup at:
Don’t forget to follow us on FACEBOOK
Want to make sure you never miss out on happenings with the local chapter and the FSHD Society? Become a member of our community today by signing up with the form to the right.
Past Events › St. Louis Chapter Events
The 2020 FSHD Connect. hosted by the FSHD Society, is the largest biennial educational and networking gathering of FSHD patients and families, researchers, and clinicians.Find out more »
UPDATE: Our community’s health and well-being are our highest priority, and so due to the risks posed by COVID-19, particularly to people with FSHD, we have rescheduled the Voice of the Patient Forum for June 29, 2020, as an online meeting. Everyone who is currently registered will be automatically re-registering for the June 29 virtual meeting. IF YOU CANNOT ATTEND, PLEASE NOTIFY US BECAUSE CAPACITY IS LIMITED. If you reserved a room for the now-cancelled April 21 meeting, please contact…Find out more »
Tim Hollenback, FSHD Radio host 12:00 PM ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It's a great community event!…Find out more »