Welcome to the Tampa Chapter!
Thank you for visiting the Tampa Chapter of the FSHD Society which officially launched in May 2019. 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.
To contact us directly, please email:
TampaChapter@fshdsociety.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 Tampa chapter.
Upcoming Events
Jan
20
Webinar on the Voice of the Patient Forum
Informational Webinar Our webinar on January 20th at noon U.S. Eastern Time will introduce our Voice of the Patient Forum (taking place on April 21) and answer your questions about how to be involved. This meeting is the FSHD Community’s platform to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will…
Find out more »Apr
21
Voice of the Patient Forum for Drug Development
This meeting is the FSHD Community’s forum to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will be submitted to the FDA’s Division of Neurology Products, Office of New Drugs, for inclusion in the framework used to evaluate future FSHD therapies. Your views carry great weight with the agency when it considers whether…
Find out more »Jun
27
2020 FSHD Connect
The 2020 FSHD Connect. hosted by the FSHD Society, is the largest biennial educational and networking gathering of FSHD patients and families, researchers, and clinicians.
Find out more »
JANE POLLOCK
Chapter Director
I am excited to be leading the Tampa Chapter of the FSHD Society. My husband, George, was diagnosed in 2006. He is the first person in his family to have FSHD. We found the FSHD Society to be a great resource and found support among its members. We wanted to help spread the word to other patients and their families about the work being done by the society. George is involved on the FSHD Society’s Board, and I wanted to contribute in my own way towards connecting families and helping to find and fund a cure.
We are currently “empty nesters” and enjoy spending as much time outdoors as we can. Our daughter, Emily, works as an engineer in California, and our son, Jacob, is a college student in Ft. Myers, Florida. We are also “parents” to our little Pomeranian, Diamond.
I am looking forward to creating a strong and active FSHD community that will advocate and provide support for those diagnosed with FSHD.
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