RAO Network

A Cure for Ellie

Ellie and her family stand in a clinic with the research team who are all wearing lab coats.
Ellie and her family with the LBSL research team in 2016 at the Kennedy Krieger Institute in Baltimore, MD. Photo courtesy of A Cure for Ellie.
Ellie and her family with the LBSL research team in 2016 at the Kennedy Krieger Institute in Baltimore, MD. Photo courtesy of A Cure for Ellie.

LBSL (Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation) is a progressive and ultra rare genetic disorder that affects the brain and spinal cord. It most often develops in children, impacting their ability to walk, to stand, and coordinate fine and gross motor skills.

In 2013, A Cure for Ellie was founded as an organization named after Ellie McGinn, a young girl in Arlington, Virginia who was diagnosed with this ultra rare and debilitating disease at age three. Ellie’s parents, Beth McGinn, launched the foundation to bring awareness, support, and hope to other newly diagnosed families and individuals.

As part of the Rare As One Network, A Cure for Ellie aims to reach new and underserved patient populations across the globe, bringing hope and information to more affected families. They also aim to establish meaningful collaborations among an emerging and diverse group of LBSL researchers, ensuring potential therapies are advanced as safely and quickly as possible

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