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 a Success!
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.
To contact us directly, please email: UtahChapter@fshsociety.org
Don’t forget to follow us on FACEBOOK
Please become an official member of our chapter and never miss a thing! Simply fill out the form in the right sidebar.
Upcoming Events
Oct
1
Webinar: COVID-19 Response Survey report
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Leann Lewis, MSGC Katy Eichinger, DPT This past spring, the FSHD Society and FSHD UK distributed a survey from the University of Rochester to assess how the neuromuscular patient community was responding to the social distancing policies imposed by the COVID-19 pandemic. We are so grateful to the hundreds of you who responded. The key investigators, Leann Lewis and Katy Eichinger, will present their findings…
Find out more »Dec
2
FSHD Society Radio
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 »
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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