Welcome to the Utah Chapter!
Thank you for visiting the Utah 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.
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.
February 26-29, Chapter Director, Allison Calder, participated in RootsTech 2020.
RootsTech brings together people across generations through genealogy and technology. The Utah Program for Inherited Neuromuscular Disorders set up a booth in partnership with the Utah Chapter of the FSHD Society.
Their booth was centered around research on FSHD, allowing attendees the opportunity to see if they “match” into one of the large Utah families whom descend from affected Mormon pioneers!
Utah Chapter Director, Allison Calder, was in attendance at the conference. If you weren't able to attend and want the information, just message Allison (UtahChapter@FSHDsociety.org) and she'll be sure to send it to you.
Upcoming Events › Utah Chapter Events
The FSHD Society is happy to support the 5th Annual UPIN FAMILY CONFERENCE PROGRAM Since 2015, the Utah Program for Inherited Neuromuscular Disorders (UPIN) has hosted an annual conference to bring together leading researchers, clinicians, and families living with neuromuscular disorders. This year the event will be VIRTUAL! UPIN sees this as an opportunity for innovative and creative programming, opening pathways to diverse connections within the Neuromuscular community that transcend the confines of space. This year’s virtual conference will be…Find out more »
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 »