Think you can pronounce “Leukoencephalopathy” correctly? Then you’ve accepted The Ellie Challenge.
The challenge is named after former Capitol Hill staffer Beth Frigola McGinn’s eight-year-old daughter Ellie, who has the rare disease.
Supporters have been asked to try and pronounce the name of the degenerative brain disease on video and if they’re right, they’ll have a chance to rename it. Those who fail are asked to make a donation of any size to medical research.
Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation, or LBSL for short, was first discovered in 2003 and fewer than 100 cases are known worldwide. The goal of Ellie Challenge’s is to elevate the disease’s profile with an easier-to-remember name.
“We have such a big fundraising mountain ahead of us that we wanted to launch something new and different to raise awareness and raise funds,” McGinn said.
Since the launch two weeks ago, about 50 people from New Zealand and Brazil to Michigan and Texas have participated and raised $3,500 so far.
One boy pronounced the name perfectly and suggested “The Awesomeness Disease.” Ellie will lead the committee that judges the suggestions but she doesn’t want it named after her.
Ellie was diagnosed with the disease at 3 and a half years old in 2011, and McGinn and her husband launched her foundation, A Cure for Ellie, about two years later.
To focus on the foundation, McGinn left her full-time job and took a part-time one with Texas Republican Rep. John Culberson in February 2015.
But, that, too, was hard to juggle — she has another daughter, Vivian, 6.
“They would be voting and I would be putting my daughter to bed,” she said.
Around a year ago, she left Capitol Hill.
“Right around that time is when we found a doctor who was willing to take on her disease, which is huge because so many rare diseases don’t get that kind of attention. You’re only helping a small population of the planet,” she said.
Their doctor is Ali Fatemi with the Kennedy Krieger Institute at Johns Hopkins.
When Fatemi came on board, the foundation had already raised $50,000.
“He put together a document with over seven years with milestones that needed to be met and cost associated with each milestone,” she said. The total cost was $3.8 million.
“The first milestone was 60K and we met that [this month]. So the researchers could start,” she said.
McGinn said the foundation’s support has been bipartisan.
“We had an auction in April and somebody who worked on the Hillary campaign donated a ‘Hillary Swag Basket’ with signed stuff and campaign memorabilia,” she said. And Targeted Victory, the data-crunching firm that grew out of Mitt Romney’s presidential campaign, helped put together its fundraising plan.
And she knows that working on the Hill has helped.
“I feel like we’re so lucky to live in Washington. How many other families can draw on resources like this? And my PR background has helped and my best friend is a political fundraiser and she’s on our board,” McGinn said.
McGinn’s first stint as a Hill staffer was in 2001 with the House Government Reform Committee. She worked for the National Republican Congressional Committee during the 2002 election cycle and half of the 2004 cycle.
After a spell in the private sector, she returned to the Hill as Texas GOP Rep. Lamar Smith’s press secretary for about four years and then communications director for the House Judiciary Committee.
She left to work on former Sen. Fred Thompson’s presidential campaign in 2008 while she was pregnant with Ellie.
After staying home for three years, she was the director of public affairs at the American Road & Transportation Builders Association for four years, and then went to Culberson’s office.