Check out this moving NPR story, by Jon Hamilton, with a spotlight on the first patient on the Pfizer Gene Therapy Clinical Trial for Duchenne Muscular Dystrophy. UPIN is currently a selected site for this clinical trial! For more information on current enrollment, check out our Clinical Trials page to contact the appropriate Clinical Research…
Infographic created by CANVA.
The 4th Annual UPIN Family Conference was featured in a special announcement made by the campus news team with @THEU News. Read the full announcement HERE to learn more about this signature UPIN event for patients and families with neuromuscular disorders.
The Myotonic Dystrophy website highlights Doctor Missy Dixon’s new study at the University of Utah. This study aims to dive into the affects of myotonic dystrophy and childhood-onset myotonic dystrophy on components such as thinking, memory, attention, and brain function. Read more about the study here!
“In this webinar, Dr. Missy Dixon, PhD, MS, reviews the importance of social connection, including the physical health and mental health benefits of social connection, how the illness experience affects social connection and interaction, and how to navigate social connection for those affected with myotonic dystrophy and their caregivers.” Access the entire webinar here!
Doctor Dixon presents the latest tools, resources, and strategies for managing disease progression and maintaining quality of life at the 2018 MDF Annual Conference. She views this as learning how to promote resilience and emphasizes a holistic approach to understanding cognitive changes. View the entire presentation here!
Genetic Medicine: A Changing Landscape for Treatment of Spinal Muscular Atrophy (Department of Pediatrics), 17 January 2019
Every month, the Primary Children’s Hospital Department of Pediatrics hosts a lecture series titled the “Pediatric Grand Rounds”. The Pediatric Grand Rounds provide a space for experts in the field of medicine to present on topics pertaining to their work in the field, research, and academic study. On January 17, 2019, Doctor Butterfield was invited…
The University of Utah and The Utah Program for Inherited Neuromuscular Disorders (UPIN) are announced as one of the 26 sites across 13 countries to be conducting the AveXis SMA trial with pre-symptomatic SMA Types 1, 2, and 3 patients. Read more about the trial and the first patient dosed HERE.
UPIN was one of the first centers to join the SMA Care Center Network. This press release describes the network itself and includes a short list of the inaugural centers. Click HERE for the full press release.