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.
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St. Louis Walk & Roll to Cure FSHD - Fall 2021!
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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
Feb
28
Rare Disease Day
The FSHD Society participates in the annual Rare Disease Day by encouraging our community to share their stories over social media. You can use words, photos, memes, or video to tell your FSHD story. Use whatever medium you're most comfortable with. The point is to share it over social media, tag your friends, ask them to share or re-post it to spread the word as widely as possible. Visit our Rare Disease Day toolkit for ideas, images to use, and…
Find out more »Mar
8
Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. At last month's meeting, we had a…
Find out more »FSHD Society Radio with Carlos Romero
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this evening is Carlos Romero, who has amazed us over the past several years by becoming a national paraclimbing champion and being featured in People magazine for losing 225 pounds following his FSHD diagnosis in 2012. He recently started his own podcast, Crappy Comics, a "podcast about comedy and courage." We can't wait to catch up with him! Join host Tim Hollenback on…
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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