“A Cure for Ellie” is a registered non-profit organization dedicated to raising awareness and funds for research into LBSL, a progressive and very rare genetic disorder that affects the brain and spinal cord; most often developing in children, affecting their ability to walk, then even to stand and coordinate fine and gross motor skills. We also provide information and support to families and individuals living with the disease.
Founded in 2013, the organization is named after a young girl in Arlington, Virginia named Ellie McGinn. At around age two-and-a-half, Ellie began showing classic symptoms of LBSL – leg spasms, poor balance, falling and hand tremors. At age three-and-a-half she was finally diagnosed. Ellie and her parents found help and hope at the Kennedy Krieger Institute in Baltimore, Maryland where research is currently underway to test and develop novel drug therapies that will hopefully lead to a cure.
Ellie takes a combination of anti-oxidants, 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 possible while they work toward a cure for her and others with this condition.
In 2016, Ellie launched a social media competition to rebrand the tongue-twisting name of the disease. By doing this, Ellie and her parents hoped to also draw attention and resources toward the research. Those who said the full name of LBSL correctly (Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation) won a chance to rename it. Those who couldn’t were asked to make a donation toward the cure effort. 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. The campaign also caught the attention of many news outlets, including “The Today Show.” Ideas for the new name of the disease 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!
#AwesomeDisease has become the rallying cry for the global LBSL community and has united our foundation with families from as far away as New Zealand, Brazil, Germany, Greece, Finland and across the United States who are also hoping for a cure for themselves and their children. Our foundation is driven by the idea that we are stronger when we are untied. In other words, “A Cure for Ellie” is a cure for all the “Awesome” people living with LBSL.
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