Welcome to the Colorado Chapter!
Thank you for visiting the Colorado Chapter of the FSHD Society!
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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Colorado Walk & Roll to Cure FSHD - September 12, 2021!
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To contact us directly, please email: ColoradoChapter@fshsociety.org.
Don’t forget to follow us on FACEBOOK!
Upcoming Events
Jun
24
FSHD University – Fulcrum Phase 2b Trial Results
4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT The team from Fulcrum Therapeutics will be sharing the data from its Phase 2b clinical trial of Losmapimod, a treatment for FSH muscular dystrophy that is intended to stop the expression of the DUX4 gene and slow the progression of symptoms. The data will be publicly presented for the first time earlier on June 24 at the FSHD Society's International Research Congress. This webinar will…
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Sharegiver Hour
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't…
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12
Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please…
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AMANDA A. HILL
Chapter Director
I grew up here in Colorado and live in Highlands Ranch with my husband, Justin, and our two adorable yellow labs. Justin was diagnosed with FSHD in 2016 at the age of 31 and the disease has since impacted our lives greatly. I work in biomedical research and I am passionate about health and scientific education and advocacy, so becoming involved with the FSHD Society was a natural and obvious step for me. Beyond the FSHD, Justin and I love nights out in Denver; gardening and enjoying our backyard with the dogs; all things having to do with food, cooking, wine, and beer; and researching cleaner, safer, more sustainable lifestyle changes. I am honored to be the FSHD Society Chapter Director in Colorado and am excited for our community to be able to grow together.
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