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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.
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 Southwest Florida, we are making plans to build on the success of last year's walk and hope you will join us!
Want to help plan or organize the Southwest Florida Walk & Roll to Cure FSHD? I'd love to have you! Let me know at SWFloridaChapter@FSHDSociety.org
Want to know more about the Walk & Roll? Learn More
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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To contact us directly, please email: SWFloridaChapter@fshsociety.org
Don’t forget to follow us on FACEBOOK
Please join us! Simply fill out the form in the sidebar to become a member of the Southwest Florida chapter
Upcoming Events
Women on Wellness – Transitions in mobility
Zoom Virtual MeetingFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do... Read More »
Wellness Hour – How do I talk to my family about FSHD?
Zoom Virtual Meeting5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT FSHD is a familial condition, and yet family members can hold different attitudes about how... Read More »
FSHD Radio: Community Profiles with Dylan King
Facebook and YouTubeTuesday, July 12th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio:... Read More »
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.
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.
