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. When she was 3, Ellie McGinn was diagnosed with LBSL, an ultra-rare, progressive genetic disorder that affects the brain and spinal cord. At the time, Ellie’s parents were not given much hope, but with love and perseverance, they launched the first comprehensive LBSL research initiative to find a cure for this debilitating disease.
Today, Cure LBSL is an international community of affected patients spanning five continents. The foundation raises money for research and offers emotional support and information to newly diagnosed families.
Our Origins
Cure LBSL was founded in 2013 as “A Cure for Ellie,” in honor of Ellie McGinn. At age 2, Ellie 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. 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 creating a nonprofit patient advocacy organization now known as Cure LBSL.
Ellie takes a combination of antioxidants, often referred to as a mitochondrial cocktail, under the guidance of a doctor in an effort to try to help energy production in the brain and spinal cord. Her parents believe this is a way to keep Ellie as strong as possible for as long as possible while they work toward a cure for her and others with this condition.
The “Awesome Disease” Campaign
“Leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation” is a big name for an ultra-rare disease, so in 2017, Ellie and the foundation launched a campaign to rename LBSL. Ideas for a new name came in from across the globe, but in the end, Ellie settled on one that would make other newly diagnosed patients “feel good about themselves” – The Awesome Disease! The campaign raised tens of thousands of dollars for research and Ellie was given the National Organization for Rare Disorders’ “Rare Impact Award” in 2017.
#AwesomeDisease has united the global LBSL community, connecting our foundation with families from New Zealand, Brazil, Germany, Greece, Finland, and the U.S. who are also hoping for a cure.