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 a Success!
Our 2020 Virtual Walk & Roll was fantastic, thanks to all of you! Our chapter overcame all the obstacles 2020 threw at us. You invited your family and friends and they showed up!
On Saturday, September 12, 2020 we joined with Chapters nationwide to celebrate in a 4-hour Facebook livestream event. It was awesome.
Did you participate? You can still earn some great rewards. The deadline for prizes is September 25th. Have some fun pictures or video to share? Add them to our google folder HERE
If you haven't had a chance to chip in, it's not too late to help us reach our goal.
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To contact us directly, please email: ColoradoChapter@fshsociety.org.
Don’t forget to follow us on FACEBOOK!
Upcoming Events
Oct
1
Webinar: COVID-19 Response Survey report
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Leann Lewis, MSGC Katy Eichinger, DPT This past spring, the FSHD Society and FSHD UK distributed a survey from the University of Rochester to assess how the neuromuscular patient community was responding to the social distancing policies imposed by the COVID-19 pandemic. We are so grateful to the hundreds of you who responded. The key investigators, Leann Lewis and Katy Eichinger, will present their findings…
Find out more »Dec
2
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. Call Tim with your questions…
Find out more »
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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