In the News
Over the years, Ellie’s journey and our mission to cure LBSL has been featured by many news outlets. Here are some of the highlights.
Today Show
On May 30, 2017 NBC’s “Today Show” with Kathie Lee & Hoda featured an amazing segment on Ellie’s journey and her mission to make other LBSL patients feel “awesome” about themselves.
CBS Baltimore
In 2020, CBS Baltimore featured Ellie’s journey and the impact that we have made for the advancement of research for LBSL. Read the full article here.
2024
Virginia Gov. Glenn Youngkin recognizes Sept. 20 as LBSL Awareness Day
2023
Virginia Gov. Glenn Youngkin recognizes Sept. 20 as LBSL Awareness Day
How Cure LBSL used illustrations to give patients a voice and stand out among large organizations (Ink Factory)
Kennedy Krieger Institute researchers receive launch award from state to study rare pediatric leukodystrophy (Kennedy Krieger)
Are rare diseases more common than we think? (Washington Family)
Organizers cancel Fairlington 5K over policy requiring course to be cleared of cars (ARLNow)
2022
Riding the wave of medical research to find a cure for Ellie (Rare Revolution Magazine)
2021
Families join in global effort to raise $400,000 in honor of Rare Disease Day (Kennedy Krieger)
2020
Young girl with rare brain disorder helps raise $450K For Kennedy Krieger Institute (WJZ Baltimore CBS News)
2019
11-Year-Old disease fighter joins global Giving Tuesday with a goal to cure rare brain disease (WJZ Baltimore CBS News)
2017
A Cure for Ellie launches “The Ellie Challenge” (MarketScreener)
2015
Child helps Johns Hopkins students learn about genetic disorder: Treatment of girl with LBSL could be key to helping future patients (WBAL-TV Baltimore 11)
2013
Arlington 5-year-old raising awareness for rare mitochondrial disease (The Washington Post)