Lighting the Way to a Cure

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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

Make plans now to Walk & Roll with us in 2022!

Our international Walk & Roll Celebration Livestream will take place on Saturday, September 17, 2022. Here in Columbus, we are making plans to build on the success of last year's walk and hope you will join us on Saturday, September 17th at the Coffman Park Pavilion in Dublin, OH

Want to help plan or organize the Columbus Walk & Roll to Cure FSHD? I'd love to have you! Let me know at StLouisChapter@FSHDSociety.org

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

When you sign up you'll receive the latest word on clinical trials, information on how to live strong, 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.

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