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.
Utah Walk & Roll to Cure FSHD - September 18, 2021!
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
To contact us directly, please email: UtahChapter@fshsociety.org
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Upcoming Events
Jul
27
Sharegiver Hour – The mental health toll of the pandemic
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 »Aug
9
Wellness Hour (Virtual Meeting)
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…
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FSHD Society Radio on our Early-Onset chapter
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…
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ALLISON CALDER
Chapter Director
I am thrilled to be a part of building a strong chapter here in Utah. FSHD became part of my life in 2013 when my husband, Curtis, was diagnosed at age 29. As a nurse, I immediately dove in, learning about the mechanisms of the disease and how it would affect our little family. The FSHD Society was an incredible resource, and becoming part of this great community has helped our family immensely. I look forward to meeting more people in our Utah community whose lives are affected by FSHD. We will work together to support each other and move toward our common goal of a treatment and cure. Curt and I live in Salt Lake City with our 4 children. We started our business, Anson Calder, shortly after Curt was diagnosed and use our business to support the FSHD Society’s mission.
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