Welcome to the Utah Chapter!
Thank you for visiting the Utah Chapter of the FSHD Society which officially launched in March 2019. 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.
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Join us for our next FSHD Society’s Utah Chapter Meeting in conjunction with the Utah Program for Inherited Neuromuscular Disorders (UPIN) Conference
UPIN Conference is from 10am-3:30pm
Utah Chapter Meeting will be held immediately following, 3:30pm-4pm
The opening talk will especially be of interest to our FSHD community as they will share the history of FSHD research in Utah and where the research is headed. CEO of the FSHD Society, Mark Stone, will be present. The chapter meeting will occur after the UPIN Conference. If you’re unable to attend the conference, you’re welcome to join us at 2:30pm for the chapter meeting!
To register for the UPIN Conference, go HERE
You can find the agenda HERE
If plan to attend the Utah Chapter Meeting please let Allison Calder, Utah Chapter Director, know by sending her an email: UtahChapter@fshdsociety.org
I look forward to seeing you there!
Allison Calder
Utah Chapter Director
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The Walk & Roll
Thank you to everyone who was able to attend our 2019 Walk & Roll to Cure FSHD! It was a beautiful day and we were honored to celebrate our fundraiser with you all. Although our event has passed, we are accepting donations until Saturday, September 21st! Keep fundraising so that you can win some amazing prizes!
To contact us directly, please email: UtahChapter@fshsociety.org
Don’t forget to follow us on FACEBOOK
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Please join us! Simply fill out the form in the sidebar to become a member of our local chapter.
Upcoming Events
Nov
20
FSHD Radio welcomes Levi Benson and Jenny Hasenjaeger
Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes. Those on the listening end of the Kansas musician's performances have been…
Find out more »Dec
7
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…
Find out more »FSHD Radio – December show
Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM EST - topic TBD
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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