Having a rare disease isn’t something most people would consider “awesome,” but to Ellie McGinn, her rare, genetic brain and spinal cord condition makes her “special,” and she wants other kids and adults with LBSL to “feel good about themselves.”
It all started when Ellie decided that the official name of her condition was too hard to pronounce – Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation. Try saying that three times fast.
“It’s a mouthful,” explained Ellie’s father, Michael McGinn, who says the long name has actually made raising funds and awareness more challenging. “The complexity in pronouncing a name has a direct impact on any organization’s ability to elevate awareness and drive investments in research. People are less likely to get behind a disease they can’t pronounce and there is simply less activism through word of mouth.”
In the fall of 2016 Ellie took to Facebook and Twitter to launch #TheEllieChallenge calling on friends and family to attempt to correctly state the name of her hard-to-pronounce disease on video for a chance to rename it. Those who failed were asked to make a donation of any size to fund critical research. Participants who pronounced it correctly on video were given chance to rename it. The contest quickly spread across the globe – with submissions coming in from as far away as New Zealand, Hungary and Brazil.
In the end, Ellie settled on the name “Awesome Disease” which was submitted by one of her classmates. She liked the name because it made her feel good about herself and she wants other newly-diagnosed patients to feel the same way! #TheAwesomeDisease has become a rallying cry for LBSL patients everywhere.