11-Year Old Disease Fighter Joins Global GivingTuesday With a Goal to Cure Rare Brain Disease

FOR IMMEDIATE RELEASE

November 28, 2019

11-Year Old Disease Fighter Joins Global GivingTuesday With a Goal to Cure Rare Brain Disease

(Arlington, VA) – December 2, 2019 – This GivingTuesday, 11-year old Ellie McGinn will celebrate giving by asking friends and followers to help raise her raise $350,000 to cure LBSL – a rare and degenerative brain condition – that robs children of their ability to walk, stand, and coordinate motor movements. In addition to an annual Facebook match program, an anonymous donor has come forward this year pledging to match every donation up to $350,000 on GivingTuesday (December 3, 2019).

GivingTuesday, taking place December 3rd, is a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage giving and to celebrate generosity worldwide. Every year, on GivingTuesday, millions of people across the globe mobilize to help others. The goal is to create a massive wave of generosity that lasts well beyond that day and touches every person on the planet.

Ellie’s story was profiled nationally on NBC’s Today Show by Kathy Lee Gifford and Hoda Kotb in 2017 soon after her ninth birthday. Her family first joined the GivingTuesday movement on Facebook that year and have since raised $45,000 as part of the program. This year, thanks to Facebook and the anonymous donor, Ellie and her family hope to raise even more.

In addition to the Facebook campaign, Ellie’s family, friends and supporters have raised over $1 million for pediatric neurological disease research at the Kennedy Krieger Institute in Baltimore, Maryland, through a variety of charitable initiatives. Scientists at Kennedy Krieger are now working to determine if Ellie’s genetic condition might be a good candidate for gene therapy – a process that helps re-write the body’s genetic code and potentially stop further damage to Ellie’s nervous system, as well as critical research towards other similar diseases.

“We have an amazing support network of family and friends which has helped us get the research effort off the ground,” said Beth McGinn, Ellie’s mother. “Science and social media have come so far so fast, and thanks to the generosity of this anonymous donor, we hope to further ride that wave of discovery and get a cure for our little girl.”

“When GT launched in the US in 2012, we believe that technology and social media could be used to make generosity go viral,” said Asha Curran, GivingTuesday’s CEO and co-founder. “We believed in the idea that people fundamentally want to give and to talk about giving; and that the social sector had the capacity to show more innovative leadership, creativity, and collaboration. People and organizations around the world proved us right. As we prepare for December 3, we’re energized and encouraged by the community’s generosity. The levels of creativity, effort and the quality of the new ideas people have contributed and shared are phenomenal.”

Those who are interested in joining “A Cure for Ellie’s” GivingTuesday initiative can visit https://acureforellie.org/giving-tuesday/. For more details about the GivingTuesday movement itself, visit the GivingTuesday website (www.givingtuesday.org).

About “A Cure for Ellie”
Founded in 2013, “A Cure for Ellie” is a non-profit organization dedicated to finding a cure for LBSL, a progressive and very rare genetic disorder that affects the brain and spinal cord; most often developing in children, affecting their ability to walk, then even to stand and coordinate fine and gross motor skills. First identified in 2004, there are thought to be less than 100 known cases world-wide. The foundation also provides information and support to newly-diagnosed families and individuals living with the disease.