NARS1

What is NARS1 disease?

The NARS1 gene is responsible for creating proteins that help cells grow and develop throughout your body. A mutation or mutations on this gene leave those impacted with cognitive, physical, and neurological issues. It can cause speech delays, abnormal brain MRI's, difficulty balancing and walking, seizures, feeding issues, and many other symptoms. We believe there are about 60 individuals in the WORLD with symptoms related to NARS1 mutations.  James is one of only 10 known individuals living with NARS1 disease in the United States and is currently the oldest diagnosed patient.  For more information on NARS1, visit the Rory Belle Foundation website here.

RBF Gala 2023.mp4