
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.
To get in touch with us, please email Chapter Director Marsha Sverdrup at: [email protected]
Don’t forget to follow us on FACEBOOK
Join us for the 2023 Walk & Roll to Cure FSHD
Mark your calendar for Sunday, September 30th, 2023 for our Annual San Diego Walk & Roll to Cure FSHD at Hawk Ridge Park *(Zachary's Playground) in Lake Saint Louis, MO. Walk & Roll to Cure FSHD is an event that unites the FSHD community to raise awareness of FSHD and move us closer to our goal of disease-modifying treatments to families by 2025. Help us meet our fundraising goal of $50,000 this year and light the way to a cure!
Learn more about the 2023 Walk & Roll to Cure FSHD here!
Upcoming Events
Women on Wellness – Instrumental activities of daily living
Zoom Virtual MeetingFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is what we call "Instrumental ADL’s... Read More »
Feeling Fit with FSHD – Bill Herzberg
Zoom Virtual Meeting18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Mitch Wade and Bill Herzberg Last month... Read More »
Wellness Hour Movie Night – Crip Camp
Zoom Virtual Meeting5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Change of topic! Instead of Happy Hour, this month we will enjoy another Movie Night... Read More »