In the News
One of our main goals is to spread awareness of LBSL. By doing so we hope to inform the general public, unite the global LBSL community and raise funds for research. Over the years, Ellie’s journey has been featured by a number of news outlets, most notably, the “Today Show with Kathie Lee and Hoda.” These are just a few of the dozens of appearances we have generated.
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 we were featured by CBS Baltimore where we talked about Ellie’s journey and the impact that we have made for the advancement of research for LBSL. We’re proud to say that we helped raise $450,000 for the Kennedy Krieger Institute. Read the full article here.
WBFF Baltimore
1 in 10 Americans are diagnosed with a rare disease. Although the number is small, it is important for those impacted to receive the correct treatment and support. Today is Rare Disease Day. Pediatric Neurologist from the Kennedy Krieger Institute Dr. Jacqueline Harris, and Parent and Founder of Cure LBSL Beth McGinn explain.
WebMD
9-Year-Old Helps Doctors Search for Cure for Rare Disease: Doctor’s track Ellie McGinn’s rare genetic disorder through remote technology so they can better understand how it develops. See how McGinn and her mother hope this new information can lead to a cure.
August 29, 2023: Cure LBSL publishes its first newsletter – Read more here
August 20, 2023: How Cure LBSL Used Illustrations to Give Patients a Voice and Stand Out Among Large Organizations – Read more here
May 26, 2023: Kennedy Krieger Institute Researchers Receive Launch Award From State to Study Rare Pediatric Leukodystrophy – Read more here
May 17, 2023: Teen with LBSL receives Arlington SEPTA Nanini Award for Outstanding Student Advocate - Read more here
March 23, 2023: Are Rare Diseases More Common Than We Think? - Read more here
March 22, 2023: Organizers cancel Fairlington 5K over policy requiring course to be cleared of cars - Read more here
April 6, 2022: Riding the wave of medical research to find a cure for Ellie. Read more here
March 1, 2021: Families Join in Global Effort to Raise $400,000 In Honor of Rare Disease Day - Read more here
February 28, 2021: Parent-Funded Research for Rare Brain Disorder at Kennedy Krieger Reaches $1.6 Million - Read more here
February 28, 2020: Young Girl With Rare Brain Disorder Helps Raise $450K For Kennedy Krieger Institute – Read more here
November 29, 2019: 11-Year Old Disease Fighter Joins Global Giving Tuesday with a Goal to Cure Rare Brain Disease - Read more here
February 27, 2017: The Ellie Challenge: Global Effort to Change Terrible Multi-Syllable Children’s Disease - Read more here
October 16, 2017: Can You Say “Leukodystrophy 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 Launches “The Ellie Challenge” - Read more here
November 3, 2015: Child helps Johns Hopkins students learn about genetic disorder: Treatment of girl with LBSL could be key to helping future patients – Read more here
September 18, 2013: Arlington 5-year old raising awareness for rare mitochondrial disease – Read more here