Patients and Families Join in Global Effort to Raise $400,000 in Honor of International Rare Disease Day

tags: Inspiring Stories

BALTIMORE, March 1, 2021United 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.

“We’ve learned more about LBSL and the genetic mutations that cause it because of the funding provided through A Cure for Ellie,” said Dr. Ali Fatemi, director of the Moser Center and Kennedy Krieger’s chief medical officer. “This understanding allows us to focus our research on ways to interrupt those mutative processes and potentially arrest the disease. Each new finding gets us that much closer to solutions and potentially a cure. This funding is essential to our work.”

For the McGinns, the Moser Center is “part of our family now,” said Beth McGinn, Ellie’s mother. “We know they want to find answers as badly as we do. We are just so incredibly grateful to have this brilliant team of researchers working toward a cure for Ellie and others like her.”

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.

“When they reached $10,000, they got to throw eggs at their father and me,” McGinn said. “When they reached $20,000, we ate hot peppers. For another amount, the girls got to pick out our outfits for the day. It was great fun and the audience stayed engaged, which helped us drive our clicks and our reach.”


About Kennedy Krieger Institute:  

Kennedy Krieger Institute, an internationally known, non-profit organization located in the greater Baltimore/Washington, D.C. region, transforms the lives of more than 25,000 individuals a year through inpatient and outpatient medical, behavioral health and wellness therapies, home and community services, school-based programs, training and education for professionals and advocacy. Kennedy Krieger provides a wide range of services for children, adolescents and adults with diseases, disorders or injuries that impact the nervous system, ranging from mild to severe. The Institute is home to a team of investigators who contribute to the understanding of how disorders develop, while at the same time pioneer new interventions and methods of early diagnosis, prevention and treatment. Visit for more information about Kennedy Krieger.   


Jamie Watt Arnold