Our Story

What began as a journey to find a cure for one child has grown into a mission of hope for families across the globe. At age 2, Ellie McGinn began having leg spasms, falling down and experiencing poor balance and hand tremors. After a yearlong diagnostic odyssey, Ellie’s parents finally received the diagnosis: LBSL, an ultra-rare, progressive genetic disorder that affects the brain and spinal cord. They were not given much hope and the internet provided few answers. So, they went on a mission to find answers, launch research and connect with other LBSL families. In the process, the nonprofit patient advocacy organization A Cure for Ellie was born.

Now known as Cure LBSL, the nonprofit has developed an international community of affected patients spanning five continents. Cure LBSL raises money for research and offers emotional support and information to newly diagnosed families.