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.
Thank you for supporting the Walk & Roll in 2022!
A huge THANK YOU to everyone who walked, rolled, donated, and showed up on Sunday, Sept. 11th in Baker Park in Naples, Florida! We are thrilled to announce that we achieved our goal of raising $60,000!!! We thank you for your support.
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
International Walk & Roll Celebration with FSHD Radio
National Virtual Walk , United States10:00 AM ET | 9:00 AM CT | 8:00 AM MT | 7:00 AM PT Tune in as FSHD Radio podcast host, Tim Hollenback, interviews Walkers and Rollers during our... Read More »
Young Professionals – Nutrition and FSHD
Zoom Virtual Meeting , United States11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT How does nutrition impact the symptoms and progression of FSHD? This week, the group will... Read More »
CarePartner Hour
Zoom Virtual Meeting , United States8:00 – 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... 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 a better life, 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.
