A CURE FOR ELLIE
Advertising/Marketing/PR - ARLINGTON, VA, US
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A CURE FOR ELLIE Details
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.
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