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
Aug
9
Wellness Hour (Virtual Meeting)
Join us this month for a follow-up discussion from last month, when the focus was on the Fulcrum clinical trial results. We felt it would be timely to discuss "clinical trial readiness" from a personal standpoint. If a Phase 3 trial were to be announced, would you volunteer? What questions would you have? What might keep you from volunteering? How are you going to talk about this with children or other family members who might be eligible? If you haven't…
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FSHD Society Radio on our Early-Onset chapter
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests are Ally Roets and her son, Sam Ray. Together with Kristin Zwickau, they are co-leading our early-onset FSHD chapter for families that have members who developed symptoms of FSHD in early childhood. This form of FSHD brings unique challenges. We seek to connect early-onset families around the world through this chapter so that they can share their knowledge and advocate for research…
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Walk & Roll Team Captain Rally
Team Captain Rally | Saturday, August 14th 12:00pm - 1:00pm ET/11:00 - 12:00pm CT/10:00am - 11:00am MT/9:00am - 10:00am PT We're bringing together team captains from across the US and Canada, via Zoom, so that we can celebrate and honor our team captains. We know that captains put in a lot of extra time and effort to rally their family and friends for FSHD and we know their efforts make a real and lasting impact. That is worth building on and celebrating.…
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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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