FOR IMMEDIATE RELEASE
October 16, 2019
Can You Say “Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation” Three Times Fast?
Neither Can the Eight Year-Old Girl Who Wants to Rename Her Rare Brain Disease
A Cure for Ellie Foundation Launches “The Ellie Challenge”
· Unprecedented contest launched to rename child’s rare, hard to pronounce, terminal brain disease
· Participants who pronounce Ellie’s current disease name correctly on video given chance to rename it
· Participants who cannot are asked to share their attempts on social media and donate to her cure
· Funds from The Ellie Challenge will go to fund research at the Kennedy Krieger Institute that aims to cure her disease.
Washington, D.C. (October 19, 2016) – A Cure for Ellie Foundation today officially launched “The Ellie Challenge” as part of an unprecedented campaign to rename a tongue twister of a uniquely rare and fatal brain disease afflicting eight year-old patient Ellie McGinn. Called Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation, the disease is a progressive degenerative disorder diagnosed in less than 100 known cases worldwide. The disease, for which there is no cure, robs children of their ability to walk, then stand, and finally to coordinate all fine motor skills.
Following nearly a year of tests to identify what Ellie McGinn was suffering from, she was ultimately diagnosed with the disease in 2011. At the time, with little scientific knowledge or research on the disease, as well as her prognosis, the ability of her parents to explain it to Ellie and others was made even more troubling from the fact that few could even pronounce it. “The Ellie Challenge” is being launched to change that and do much more.
Ellie took to Facebook and Twitter (#TheEllieChallenge) last week to unofficially issue “The Ellie Challenge”, 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 get it right can email their video and name suggestion to firstname.lastname@example.org and will hear back after Ellie and her committee have reviewed submissions. Those who fail have been asked to make a donation of any size to fund critical research. All who participate are asked to post their videos on Facebook or Twitter and issue the same challenge to three others that they know.
“It’s an awful disease with an awful name,” said Beth McGinn, Ellie’s mother. “It was hard enough to try and explain the disease to our daughter, let alone even pronounce it. Upon hearing the news of Ellie’s diagnosis one of our friends said ‘first and foremost, let’s find a cure, but in the meantime, let’s also change the damn name of this horrible disease.’ It’s now Ellie’s wish and that’s exactly what we are going to.”
Adding to the challenge of saving Ellie, is the fact that her disease is so rare. It means that raising the $3.3 to $3.8 million needed fund critical research at the Kennedy Krieger Institute in Baltimore is left up to the family and supporters. Research being conducted at Kennedy Krieger by Dr. Ali Fatemi, head of the Institute’s Center for Leukodystrophies and professor of neurology and pediatrics at Johns Hopkins University, aims to provide a roadmap towards Nano therapies for Ellie’s disease. The outcomes of the research will become a very powerful tool for testing new medications and treatments that could one day cure Ellie’s disease and many others.
“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 say and there is simply less activism through word of mouth.”
Proceeds from the “The Ellie Challenge” are tax deductible (Tax ID # 46-2829156) and will go towards the Kennedy Krieger Institute to fund Leukodystrophy research. For more information about Ellie McGinn, the A Cure for Ellie Foundation or relevant research taking place, please contact Cornelia Horner at (202) 617.3007 or email@example.com.