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.
2021 Utah Walk & Roll a Tremendous Success!
On Saturday, September 18, walkers and rollers stepped out to say "FSHD Ends with Me!" at the annual Utah Walk & Roll. Our local event raised nearly $7,000 towards the campaign total, through participants and teams from across the state.
Stay tuned as we begin the planning for our 2022 Utah Walk & Roll to Cure FSHD!
As long-time partners and supporters of the Utah Program for Inherited Neuromuscular Disorders at the University of Utah (UPIN), we were so excited to be a part of their free day at Hogle Zoo in August!
Learn More: Family Day at the Zoo Flyer
Make sure you are on our mailing list and never miss info about great local events.
To contact us directly, please email: UtahChapter@fshsociety.org
Don’t forget to follow us on FACEBOOK
Upcoming Events
FSHD University: Pregnancy and reproductive genetic counseling
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Sanne Vincenten, MD, and Nicol Voermans, MD PhD, of Radboud University Medical Center, and... Read More »
Sharegiver Hour
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... Read More »
Women on Wellness
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women... Read 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.
Stay Informed on Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of the local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live strong, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
