Colorado Chapter

Welcome to the Colorado Chapter!

This chapter was founded by Amanda A. Hill. We officially launched our Chapter on Saturday, October 13th, 2018 with a fabulous community of patients, family members, researchers, clinicians, and friends. We hope to help patients, caregivers, and their families connect and advocate for themselves and each other.

Mark your calendars and starting making plans to join us for our next, very special, Colorado Chapter Meeting on World FSHD Day, June 20th!! We’ll be experiencing an exclusive, behind-the-scenes look at FSHD research happening right now at the University of Colorado Anschutz Medical Campus. Our meeting will be at a very different time and location than usual, but we hope that you will carve the time out of your typical Thursday to be with us. Dr. Sujatha Jagannathan and Amanda Hill will be showing you the ins-and-outs of a thriving medical research community, including actual science that is advancing the field of FSHD at this very moment. You won’t want to miss this! Find more details and RSVP HERE!

The Walk & Roll

It’s official – The 2019 Walk & Roll to Cure FSHD is up & running! We can’t wait to celebrate our 4th annual fundraiser with you all. We have some big goals for this year, because we want a cure NOW! Please join us in this awesome event to raise awareness, build our community, and most importantly, fund the CURE for FSHD! Register to participate or support our event by making a donation HERE!

To contact us directly, please email:

Visit the FSH Society Events calendar to search for upcoming events in your area!

Would you like to get involved? Simply fill out the form below: