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NE Florida Chapter
Thank you for visiting the NE Florida Chapter of the FSHD Society which officially launched in March 2021. 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 NE 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 NE Florida Walk & Roll to Cure FSHD? I'd love to have you! Let me know at NEFloridaChapter@FSHDSociety.org
Want to know more about the Walk & Roll? Learn More
To contact us directly, please email: NEFloridaChapter@FSHDSociety.org
Please join us! Simply fill out the form in the sidebar to become a member of the NE 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 »
CHRISTI THISSEN
Chapter Director
I'm Christina Thissen and I am excited to have an FSHD chapter in our local community. I was diagnosed with FSHD in 1998 when I was 19 years old. I own an IT Managed Services company in Jacksonville with my big brother who also has FSHD. I look forward to bringing others together in our community to share stories and resources.
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.
