The Ellie Challenge: Global Effort to Rename Terrible Multi-Syllable Children’s Disease

FOR IMMEDIATE RELEASE

February 22, 2017

The Ellie Challenge: Global Effort to Rename Terrible Multi-Syllable Children’s Disease

· Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation is a hard to pronounce, terribly-named disease that makes it hard for fundraising and awareness efforts.

· Ellie McGinn launched a campaign to rename her disease and people around the globe responded with touching and insightful ideas.

· The winner, a third-grader and classmate of Ellie’s, Lucas Aaronson, renamed it the “Awesome Disease.”

Washington, DC (February 22, 2017) – Today, A Cure for Ellie Foundation announced the new name for eight-year-old Ellie McGinn’s rare and fatal brain disease following months of individuals around the world partaking in The Ellie Challenge. Participants were asked to properly pronounce this mouthful of a disease, Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation, and asked to post their attempts to Facebook. Those who said it successfully were invited to submit a new name for the disease, and those who couldn’t were asked to donate money to the Kennedy Krieger Institute for research aimed at fixing Ellie’s disease.

Since the challenge started, countless videos and donations were made, coming from close to home in Virginia and across America, and from as far away as Brazil, New Zealand and Hungary.

While three U.S. Senators were among those who took the challenge, the winning name came from Ellie’s own community. Third-grader and classmate Lucas Aaronson studied the disease name for days to make sure he got it just right and then came up with the new name, the “Awesome Disease.”

Formerly known as Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation, Ellie and her committee have officially renamed it the Awesome Disease. Awesome Disease, is a progressive degenerative disorder that robs children of their ability to walk and coordinate motor skills. The fact that the disease has been diagnosed in less than 100 cases worldwide has made it difficult to find information and secure funding.

When asked how he picked the new name, Lucas said, “I just like the word awesome.” For a disease that mostly affects children, no other explanation is needed or could provide more comfort to newly diagnosed children.

“I like it because it will make other kids with this disease feel good about themselves,” explained Ellie.

“This new name is really refreshing for our family,” said Beth McGinn, Ellie’s mom. “Not only did The Ellie Challenge bring together families from our community and around the world, who were united in working towards the goal of renaming this awful disease, but we were successful in finding a new name. We are hoping that this new name will make it easier to raise awareness for Ellie, Marco, Patrik and other children around the world.”

In addition to the winning name, Awesome Disease, the runners-up names were also inspiring and the McGinn family was very appreciative for all of the thought and effort put into the contest. Other submissions included:

· Marcellie’s Syndrome, which is a combination of Ellie and Marco, who also suffers from the disease, by David Ring and James Vaile

· LE-Syndrome, pronounced Ellie, by Krisztina Gyori, grandmother of five-year-old Patrik in Germany who has Ellie’s disease

· R2D2 – Really Rare DARS 2, by Abingdon Cardinal, School mascot for Abingdon Elementary, where Ellie attends third-grade

· Powerhouse Deficiency Disease, by Clayton Forsythe, ten-year old Virginia girl who said Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation perfectly

The fact that the disease is so rare is an added challenge to finding a cure for children like Ellie. It means that raising $3.3 to $3.8 million needed to 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 Moser 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 the Awesome Disease and possibly many others.

Proceeds from the “The Ellie Challenge” were tax deductible (Tax ID # 46-2829156) and went 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 chorner@theheraldgroup.com.