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, Beth and Mike McGinn, finally received the diagnosis: LBSL.

They were not given much hope and the internet provided little information about this ultra-rare, progressive genetic disorder that affects the brain and spinal cord. 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 patients and researchers. Cure LBSL funds research and offers support and information to patients and families.