Welcome to the South Carolina Chapter!
Thank you for visiting the South Carolina Chapter of the FSHD Society which officially launched in October 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: SouthCarolinaChapter@fshdsociety.org.
Please join us! Simply fill out the form in the sidebar to become a member of the South Carolina 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 »
Frank Hanley
Chapter Director
Frank Hanley and wife Donna recently relocated to Myrtle Beach from Maryland. Frank was active with the Greater Philadelphia Chapter, and offered to start-up the South Carolina Chapter when he found that a local group did not exist. He feels strongly about the need to share treatment information, personal experiences, support and encouragement.
Frank suffers with FSHD and has been struggling with the disease all of his adult life. He practices martial arts as his way of fighting back. He is positive about the research being done in search of the cure.
Frank holds a Master’s Degree in Project Management. He and Donna have four children (two boys and two girls), and a grandson.
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