Rory Belle Foundation

Our Story

When Rory Belle was born in 2019, she completed a family of four. Her parents and brother were overjoyed, unaware that Rory was facing a life-threatening condition from the moment of her birth. Over 17 months, Rory experienced a heartbreaking journey filled with symptoms like failure to thrive, seizures, and liver failure. Despite the challenges, her family remained hopeful until whole exome sequencing revealed mutations on her NARS1 genes. Sadly, Rory passed away peacefully in 2021, surrounded by her loved ones. In her memory, the Rory Belle Foundation was established to provide joy and support to others affected by NARS1 mutations.

Our Impact

The Rory Belle Foundation is dedicated to raising $4 million to fund critical research and develop gene replacement therapy for NARS1 disease. With existing biotechnology, there is hope for a cure, but it requires community support to turn this vision into reality.

Why Donate?

Your contributions will directly support research efforts and the development of life-changing therapies for individuals affected by NARS1 mutations.

Join the Cause

Make a difference today! Your donation, whether in cryptocurrency or cash, can help bring hope and treatment options to families facing NARS1 disease. Together, we can create a brighter future for those in need.