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.
Save the Date for the 2023 Walk & Roll to Cure FSHD!
Get ready for another year of fun and fundraising! Walk and Roll with your family, friends, and neighbors anytime during the month of September, then be sure to join us at our Thank You celebration on Saturday, September 16th, where we'll be back at the Jacksonville Jumbo Shrimps baseball game! Get started by registering here! We thank you for your support.
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
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 »
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 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.
