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
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Please join us! Simply fill out the form in the sidebar to become a member of the Tampa chapter.
Upcoming Events
Nov
20
FSHD Radio welcomes Levi Benson and Jenny Hasenjaeger
Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes. Those on the listening end of the Kansas musician's performances have been…
Find out more »Dec
7
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…
Find out more »FSHD Radio – December show
Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM EST - topic TBD
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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