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
Our 2020 Walk & Roll has gone VIRTUAL! Please join us, and invite your family and friends from wherever they are to join us too!
We will "see" you on Saturday, September 12, 2020 - when all of our Chapters nationwide will join together!
Click the button below to register or donate!
All of our worlds have been highly impacted by the corona virus pandemic, yet our commitment to our families remains the same. This is why we must continue to move forward!
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
Aug
5
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. It's a great community event!
Find out more »
Webinar on scapular stabilization surgery
Dr. Anthony Romeo NOTE CHANGE OF DATE. Join us for our webinar on scapular stabilization surgery at 1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. One of the classic symptoms of FSHD is "scapular winging." The muscles around the shoulder blade (scapula) weaken and allow the bone to jut out like an angel's wing. This can cause pain and prevent a person from being able to raise the arm. A solution that works…
Find out more »Sep
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. It's a great community event!
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.
Stay Informed on Local Activities
Are you not already a member of the Society? Sign-up via our new member form and get connected!
