A warm and honest story from the Anderson family, sharing life with NARS1 through the eyes of James, currently the oldest known member of the NARS1 community. From a diagnosis that took nearly 30 years to moments of joy found in hockey games, music and community, this story reflects both the challenges and the deep love that shape life with a rare condition.

You might have seen us talk about mouse models, and more recently, fruit fly research. But why are they so important?

This blog explains how scientists use these models to understand NARS1, why they’re a crucial step before any treatment can be tested, and how your fundraising is helping make this research possible.

A simple, parent-friendly guide to understanding your child’s genetic report, including NARS1 variants, classifications and what the results mean.

Read the Lo Re family’s story, they have shared honestly of Gabriels difficulties since birth, but they don’t let this stop them. A heart warming story that will resonate with many.

Explore the inspiring story of the Jenson family as they navigate life with Talan, their son living with NARS1 Disorder. From early challenges to community support, learn how they find joy, routine, and hope every day.

A powerful night at Detroit’s Eastern Market brought together more than 500 guests and raised an incredible $200,000 for NARS1 research. Hosted by the Bedway family, the event was filled with community, storytelling, laughter, and hope, all helping to drive forward The Rory Belle Foundation’s mission.

Discover how scientists are using yeast to unravel the complexities of NARS1 Disorder, and what that could mean for future research, care, and hope for affected families.

Families, researchers, and clinicians came together in Croatia for the first-ever Rory Belle Foundation Family & Researcher Gathering on NARS1 Disorder.

We’re so proud to share that Dr. Ingrid Vallée, our very own scientific advisor at The Rory Belle Foundation, has had a major research paper published as part of her PhD.