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 three-and-a-half a girl named Ellie McGinn was diagnosed with LBSL, a progressive and very rare genetic disorder affecting the brain and spinal cord; most often developing in children, impacting their ability to walk, then stand and eventually coordinate fine and gross motor skills. At the time, Ellie’s parents were not given much hope, but with love and perseverance they found ways to keep Ellie strong and launched the first-ever 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
Founded in 2013, the organization was originally named “A Cure for Ellie” 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. After a year- long 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 non-profit 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.
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. 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. They 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 united.