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, February 8th
Please mark your calendars for our first Chapter Meeting of 2020! Dr. Puwanant, an FSHD specialist from Wake Forest Baptist Medical Center will be joining us to speak.
Please find more details & 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
Mar
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FSHD Society Radio with Julie Cohen, genetic counselor
Julie Cohen, MSc, genetic counselor 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It's a great community event!…
Find out more »Apr
1
FSHD Society Radio
Tim Hollenback, FSHD Radio host 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out more »Webinar on preparing for the Voice of the Patient Forum
Our webinar will prepare you for the Voice of the Patient Forum on April 21. The webinar is noon-1:00 pm ET | 11:00 am-noon CT | 10:00-11:00 am MT | 9:00-10:00 am PT. The Forum 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 be…
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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