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.
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.
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 › Colorado Chapter Events
Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes. Those on the listening end of the Kansas musician's performances have been…Find out more »
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…Find out more »