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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: StLouisChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK

Thank you for supporting the Walk & Roll in 2022!

 

A huge THANK YOU to everyone who walked, rolled, donated, and showed up on Saturday, September 17th in Hawk Ridge Park in Lake Saint Louis, Missouri! We are thrilled to announce that we achieved our goal of raising over $15,000!!! There is still time to contribute, and you can do so here: https://team.fshdsociety.org/stlouiswalkroll

Want to know more about the Walk & Roll? Learn More

Upcoming Events

Today

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Women on Wellness: On Mattering

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we'll be talking about "mattering," feeling valued as a... Read More »

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Wellness Hour: Holiday revels

Zoom Virtual Meeting

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, you're invited to come dressed in Zoom-worthy holiday apparel, with favorite seasonal libations... Read More »

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Marsha Sverdrup

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.

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