Riders from the 2017 “Coast 2 Coast FSHD – An Epic Fund-Raising and Awareness Bicycle Journey” stopped by the UPIN Lab to meet with Dr. Butterfield and other members of the UPIN team!
See below for the miraculous story of one of Dr. Butterfield’s Spinal Muscular Atrophy patients who received groundbreaking gene therapy replacement therapy through one of our clinical trials!
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…
Our colleague Sara Turner from Behavioral Health put together this extensive list of mental health and education resources for healthcare providers, patients, and families. It contains helpful patient care and self-care information that we have been sharing with patients and families! CHECK IT OUT: Mental Health and Education Resources COVID-19_0422020
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!