Welcome to the North Carolina Chapter!
Thank you for visiting the North Carolina Chapter of the FSHD Society which officially launched in October 2018. 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.
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Join Us for Our Next Chapter Meeting on Saturday, November 9th
This next chapter meeting will be discussing Health Insurance, the North Carolina Chapter’s 2019 Walk & Roll to Cure FSHD, next year’s agenda for the chapter, Mental Health resources, and a discussion on mental health with FSHD.
Please RSVP HERE!
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Walk & Roll
Our second annual Walk & Roll to Cure FSHD took place on Saturday, Oct. 5th, 2019 at North Carolina State University – Talley Student Union! A million THANK YOU’s to everyone who was involved with this fabulous event!
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To reach us, please email:
NCChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK
Want to make sure you never miss information about activities with the chapter? Become a member by filling out the form on the right.
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 »
MEREDITH HUML
Chapter Director
We need a cure, and I am passionate about being a part of finding it in any way I can.
You can reach me by email: NCChapter@fshdsociety.org.
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