“Cure SMA’s national support programs are available to all individuals and families affected by SMA who reside in the U.S. Most of these resources are provided at no cost to those impacted by SMA.” Check out the CureSMA website for resources available for families with SMA at: National Support – Cure SMA.
The FSHD Advocate recently published an article about our groundbreaking research of the clinical manifestations and inheritance of FSHD in a large Utah kindred. Read the entire article HERE!
Check out this news story about how gene replacement therapy has been a game changer for neuromuscular disorders, especially babies diagnosed with Spinal Muscular Atrophy.
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.