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.
The Northeast Florida Walk & Roll to Cure FSHD - Fall 2021!
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
May
11
FSHD Society Radio with Lori Brant, personal coach
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Lori Brant Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. "Our guest this month is Lori Brant, a life coach who lives with FSH muscular dystrophy.…
Find out more »Jun
3
FSHD University – The MOVE Study
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT Kate Eichinger, DPT, and Johanna Hamel, MD. Presented by Johanna Hamel, MD, and Kate Eichinger, DPT, from the University of Rochester Medical School. When doctors diagnose individuals with a progressive condition like FSH muscular dystrophy (FSHD), they’re often asked, What does the future look like? Will I need to use an orthotic brace? How long do I have before I need to use a walker…
Find out more »FSHD Society Radio – Jammin’ with Jamshid
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this month is our very own Jamshid Arjomand, PhD, chief science officer. He'll update you about the latest research and drug development advances (that he's allowed to talk about). If you have questions about FSHD research, now's your chance to get them answered! Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts,…
Find out 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.
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