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
Dec
18
FSHD Radio – Meet Meredith Huml
Meredith Huml Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM ET | 8:00 PM Central. His guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a "disease she had never heard of," Meredith faced the wrenching loss of her beloved dancing. Her younger brother Jonathan as diagnosed with FSHD as well, with symptoms that progressed even faster than hers. After years of struggling, she has not…
Find out more »Jan
8
FSHD Society Radio interview with Scott Harper, PhD
Scott Harper,PhD Join radio host Tim Hollenback via Facebook Live on Wednesday, January 8, at 9:00 PM ET | 8:00 PM Central. His guest this month is FSHD research rock star Scott Harper, PhD, a leader in the effort to develop gene therapy. Harper is principal investigator at the Center for Gene Therapy at the Research Institute at Nationwide Children's Hospital, and associate professor of pediatrics at the Ohio State University College of Medicine, Columbus, Ohio. He is a molecular biologist…
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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…
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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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