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.
Come Join Us at RootsTech 2020
The Salt Palace Convention Center
The Utah Program for Inherited Neuromuscular Disorders will be setting up a booth at RootsTech 2020. RootsTech is a global family history conference where people from across generations are brought together through genealogy and technology.
The booth will be centered around research on FSHD by allowing attendees with the opportunity to see if they “match” into one of our large Utah families whom descend from affected Mormon pioneers!
Our Utah chapter director, Allison Calder, will be in attendance at the conference. If you have any questions, please message her directly at UtahChapter@FSHDSociety.org
If you can't attend, you can still get all of the information. Just message Allison (UtahChapter@FSHDsociety.org) and she'll be sure to send it to you.
I look forward to seeing you there!
Utah Chapter Director
2020 Utah Walk & Roll - Details Coming Soon!
Our inaugural Utah Walk & Roll to Cure FSHD was a huge success and we can't wait to do it again! Check back for details on our 2020 event and make plans to join us!
To contact us directly, please email: UtahChapter@fshsociety.org
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Please become an official member of our chapter and never miss a thing! Simply fill out the form in the right sidebar.
Past Events › Utah Chapter Events
Scott Harper,PhD Join radio host Tim Hollenback via Facebook Live on Wednesday, January 8, at 9:00 PM ET | 8:00 PM Central. His guest this month is FSHD research rock star Scott Harper, PhD, a leader in the effort to develop gene therapy. Harper is principal investigator at the Center for Gene Therapy at the Research Institute at Nationwide Children's Hospital, and associate professor of pediatrics at the Ohio State University College of Medicine, Columbus, Ohio. He is a molecular biologist…Find out more »
Informational Webinar Our webinar on January 20th at noon U.S. Eastern Time will introduce our Voice of the Patient Forum (taking place on April 21) and answer your questions about how to be involved. This meeting is the FSHD Community’s platform to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will…Find out more »
Justin and his family at the Magic Kingdom. 9-10 pm ET | 8-9 pm CT | 7-8 pm MT| 6-7 pm ET Join host Tim Hollenback on Facebook Live for a chat with Justin TurfTank VanLanduit, who was diagnosed with FSHD in 2013 at the age of 33. "It was a blow to be told I have a degenerative neuromuscular disease that has no cure," Justin recalls. "I've always been very active with sports, but worse than the realization that…Find out more »