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)

Fairlington 5K will be back for 2022 (Inside NOVA)

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)

Fairlington 5K goes virtual for 2020 (Inside NOVA)

2019

Annual 5K race through Fairlington returns to support girl with rare disease (ARL Now)

Fairlington 5K, auction brings in record totals (Inside NOVA)

11-Year-Old disease fighter joins global Giving Tuesday with a goal to cure rare brain disease (WJZ Baltimore CBS News)

2018

Working Woman: Beth McGinn, finding a cure for Ellie (WJLA/ABC7)

Fairlington 5K to benefit girl with rare disease (ARL Now)

2017

With Ellie Challenge, family hopes to bring attention to daughter’s rare disease (ABC)

Bolstering hope in Arlington (Connection Newspapers)

A Cure for Ellie launches “The Ellie Challenge” (MarketScreener)

2016

Texan tackles tricky tongue twister for #TheEllieChallenge (The Hill)

Let’s Talk Live: A cure for Ellie (WJLA/ABC7)

2015

Hill staffer searches for her daughter’s cure (Roll Call)

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)