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 »
MARSHA SVERDRUP
Chapter Director
My family and I were introduced to the “world of FSH” almost eight years ago when my oldest daughter, 10 years old at the time, was diagnosed with the infantile form. Since we had no family history of this disease we were, needless to say, shocked by this diagnosis. As a parent I wanted to do whatever I could for my daughter so we joined the FSHD Society where we found a community of people that provided us with both information and support. I appreciate the opportunity to be able to give back to this community as the Director of the St Louis Chapter.
Stay Informed on Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of the local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
