ARTBA CEO Dave Bauer, Beth McGinn, Ellie McGinn, ARTBA COO Matt Jeanneret

By Eileen Houlihan, senior writer/editor, ARTBA

Ten-year-old Ellie McGinn continues to fight for a cure to the rare, hard to pronounce brain and spinal cord disease she was diagnosed with in 2011. To spread the word and continue to raise funds for research, she and her mom Beth, who served as ARTBA director of public affairs from 2011-14, visited ARTBA’s D.C. offices April 26. They shared an update on steps the foundation the family started, “A Cure for Ellie,” are taking to fund ongoing research at the Kennedy Krieger Institute in Baltimore, Maryland, including an April 27, 5K race and silent auction.

Ellie’s story was featured on NBC’s TODAY show in 2017, which helped kick start the clinical research studies. She and her family know that increased awareness of the disease, Leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation (commonly referred to as LBSL), will help to continue the research and find a cure.

LBSL, a rare genetic disorder with only about 100 diagnosed cases worldwide, does not allow those afflicted with it to produce a protein essential for production of myelin, a critical substance for proper functioning of the brain and nervous system. Myelin is essential for transmission of signals from the brain to the rest of the body. Ellie previously asked her friends and followers on social media to help give the disease a new, more recognizable and upbeat name. The winner announced on World Rare Disease Day in 2017 was “The Awesome Disease.”

ARTBA’s D.C.-based staff is providing financial support for the cause.  We also encourage our members to support Ellie and the McGinn family through donations via her website and by spreading the word on social media using the hashtag #TheAwesomeDisease.