Welcome to the Southwest Florida Chapter!
Thank you for visiting the Southwest Florida 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.
Volunteer Spotlight: Heloise Hoffmann
Hear from your local Chapter Director, Heloise Hoffmann, about her journey with FSHD, how she got involved with the FSHD Society, and why she's hopeful for the future.
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Southwest Florida Walk & Roll to Cure FSHD - September 18, 2021!
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To contact us directly, please email: SWFloridaChapter@fshsociety.org
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Please join us! Simply fill out the form in the sidebar to become a member of the Southwest Florida chapter
Upcoming Events
Jun
24
FSHD University – Fulcrum Phase 2b Trial Results
4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT The team from Fulcrum Therapeutics will be sharing the data from its Phase 2b clinical trial of Losmapimod, a treatment for FSH muscular dystrophy that is intended to stop the expression of the DUX4 gene and slow the progression of symptoms. The data will be publicly presented for the first time earlier on June 24 at the FSHD Society's International Research Congress. This webinar will…
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Sharegiver Hour
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't…
Find out more »Jul
12
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). The Wellness Hour 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. If you are interested, please…
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HELOISE HOFFMANN
Chapter Director
At thirteen years old, I was diagnosed with FSHD. As a teenager, I was devastated to learn that I wouldn’t anymore be able to ride horses or play tennis, my previous two biggest passions. It took me a while to accept the news, and, to be honest, I’ve just recently come to terms with it. From the beginning, I knew I wanted to do something about it and that I couldn’t just sit around and feel sorry for myself. The FSHD Society has given me so much hope, and I’m excited to give back and share this hope by leading the Southwest Florida Chapter! I look forward to helping build a strong community that will support each other like a family. Originally from Belgium, I moved to Texas, then Florida and live with my wonderful family and Golden Rocky.
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