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.
As long-time partners and supporters of the Utah Program for Inherited Neuromuscular Disorders at the University of Utah (UPIN), we are excited to announce their upcoming event. UPIN has decided to replace their traditional conference model with a social event for the year 2021: a free day at Hogle Zoo!
Learn More: Family Day at the Zoo Flyer
Ready to register? Sign Up Here
Upcoming Events › All Chapters
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. This month, we have a recommended reading, this NPR story, "Unpaid Caregivers Were Already Struggling. It's Only Gotten Worse During The Pandemic." A recent study found that family caregivers…Find out more »
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please…Find out more »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests are Ally Roets and her son, Sam Ellis. Together with Kristin Zwickau, they are co-leading our early-onset FSHD chapter for families that have members who developed symptoms of FSHD in early childhood. This form of FSHD brings unique challenges. We seek to connect early-onset families around the world through this chapter so that they can share their knowledge and advocate for research…Find out more »