United by a rare disease and the hope for its cure, families from around the world raised $400,000 for medical research at Kennedy Krieger Institute’s Moser Center for Leukodystrophies.
The effort, which was led by 12-year-old Arlington, Virginia resident Ellie McGinn and her family’s nonprofit, A Cure for Ellie, undertakes a similar project every year in honor of International Rare Disease Day on Feb. 28.
Ellie is one of about 100 patients worldwide who has Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation (LBSL), a progressive condition impacting the brain and spinal cord. It most often develops in children, affecting their ability to walk, stand and coordinate fine and gross motor skills.
For six years, A Cure for Ellie and the McGinn family have spearheaded a fundraising project around International Rare Disease Day, and in total, their efforts have raised $2 million for LBSL research at the Moser Center.
This year, the fundraising went virtual, because of the COVID-19 pandemic. Families held virtual walks, conducted social media outreach and created Giving Tuesday campaigns. The smallest contribution was $1 and the largest $100,000, and donations came in from Russia, New Zealand, Greece, Belgium, Italy, and of course, the United States.
For their part, Ellie and her sister Vivian starred in their own Facebook live fundraiser that let the kids have a little fun at their parents’ expense when certain goals were reached.