Welcome to the Colorado Chapter!
Thank you for visiting the Colorado 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 November 9th!
Beth Johnston from the FSHD Society will be sharing FSHD Society updates, milestones and goals, and giving an inside peek into what’s coming in 2020. We’ll also vision together for what we as a Chapter want to see happen in 2020, and of course celebrate a wonderful 2019! Light refreshments will be provided.
Please note that the Event Hall in the library is on the second floor. There is an elevator to the right of the main-level entrance to get upstairs.
Please RSVP HERE.
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The Walk & Roll
Thank you to everyone who was able to attend our 2019 Walk & Roll to Cure FSHD! It was a beautiful day and we were honored to celebrate our 4th annual fundraiser with you all. Although our event has passed, we are accepting donations until Saturday, September 21st! Keep fundraising so that you can win some amazing prizes!
To contact us directly, please email: ColoradoChapter@fshsociety.org.
Don’t forget to follow us on FACEBOOK!
Upcoming Events
Jan
20
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…
Find out more »Feb
8
Colorado Chapter Meeting
Join us for our next Colorado Chapter Meeting, where we'll be learning about and discussing together a couple strategies for staying mobile and active. Scott Riddle from Creative Technology will be attending to present orthotic and other assistive mobility device options and our very own Katie Ruekert will be sharing her own journey and experience with yoga. Light refreshments will be provided.
Find out more »Apr
21
Voice of the Patient Forum for Drug Development
This meeting is the FSHD Community’s forum 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 submitted to the FDA’s Division of Neurology Products, Office of New Drugs, for inclusion in the framework used to evaluate future FSHD therapies. Your views carry great weight with the agency when it considers whether…
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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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