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 - Fall 2021
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.
To contact us directly, please email: UtahChapter@fshsociety.org
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Upcoming Events
Jan
21
FSHD University: Introduction to whole-body MRI for FSH muscular dystrophy
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT We refer often to MRI (magnetic resonance imaging) as an almost magical way to peer inside the body and see what's going on with our muscles. MRI is a key component of Fulcrum's ReDUX4 clinical trial for FSH muscular dystrophy. But do you really understand how this technology works, and what it can and can't reveal? Is it useful only for research, or does it…
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Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET 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. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Feb
8
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). It 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. Our January meeting was fantastic! Attendance is…
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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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