Welcome to the Utah Chapter!
Thank you for visiting the Utah Chapter of the FSHD Society which officially launched in March 2019. 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 FSHD Society’s Utah Chapter Meeting in conjunction with the Utah Program for Inherited Neuromuscular Disorders (UPIN) Conference
UPIN Conference is from 10am-3:30pm
Utah Chapter Meeting will be held immediately following, 3:30pm-4pm
The opening talk will especially be of interest to our FSHD community as they will share the history of FSHD research in Utah and where the research is headed. CEO of the FSHD Society, Mark Stone, will be present. The chapter meeting will occur after the UPIN Conference. If you’re unable to attend the conference, you’re welcome to join us at 2:30pm for the chapter meeting!
If plan to attend the Utah Chapter Meeting please let Allison Calder, Utah Chapter Director, know by sending her an email: UtahChapter@fshdsociety.org
I look forward to seeing you there!
Utah Chapter Director
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 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: UtahChapter@fshsociety.org
Don’t forget to follow us on FACEBOOK
Please join us! Simply fill out the form in the sidebar to become a member of our local chapter.
Upcoming Events › Utah Chapter Events
Meredith Huml Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM ET | 8:00 PM Central. His guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a "disease she had never heard of," Meredith faced the wrenching loss of her beloved dancing. Her younger brother Jonathan as diagnosed with FSHD as well, with symptoms that progressed even faster than hers. After years of struggling, she has not…Find out more »