Welcome to the St. Louis Chapter!
Thank you for visiting the St. Louis Chapter of the FSHD Society which officially launched in November 2018. 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.
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The St. Louis Walk & Roll
Save the Date for Our 2020 Walk & Roll!, September 12th!
In recent weeks, all of our worlds have been highly impacted by the corona virus pandemic, yet our commitment to our families remains the same.
The FSHD Society has been hard at work on a thoughtful and impactful response to the COVID-19 pandemic, bringing resources to our community to help us all through. We want to do the same on a local level. That is why we must continue to look to the future.
We hope to see you on September 12th, 2020!
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To get in touch with us, please email Chapter Director Marsha Sverdrup at:
StLouisChapter@fshdsociety.org
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.
Upcoming Events
Apr
15
FSHD Radio Sequester Camp
CHANGE OF TIME TO: 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it’s important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on your mind. Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome…
Find out more »FSHD Radio Sequester Camp
CHANGE OF TIME TO: 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it’s important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on your mind. Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome…
Find out more »FSHD Radio Sequester Camp
CHANGE OF TIME TO: 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it’s important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on your mind. Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome…
Find out 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.
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