Started by Ellie’s neighbors in 2013, the “Fairlington 5K” normally attracts over 700 hundred runners from around Virginia, Washington D.C., Maryland and beyond raising over $100,000 for Ellie’s cure. This year, because of COVID-19, we are going virtual – which means we are going GLOBAL! Anyone in any country can run to support Ellie or their own loved one affected by LBSL. The new “Awesome5K” starts October 7 and ends November 7. Join #TeamAwesome and get your race swag today! Register NOW
#GivingTuesday is a global philanthropic movement that raises tens of thousands of dollars for the cure LBSL effort each year. This special day of giving takes place the Tuesday after Thanksgiving and after “Cyber Monday.” On this day only, donations to “A Cure for Ellie” made through Face Book are matched. Our 2019 #GivingTuesday campaign raised an incredible $152,000 for LBSL research! This year’s day of giving takes place December 1. Stay tuned for details.
LBSL Conference: Connection, Collaboration, Cures
Every two years, “A Cure for Ellie” and the Kennedy Krieger Institute team up to host an international conference for patients and doctors interested in or affected by LBSL. Originally set for My 28-30 in Baltimore, Maryland, this year’s in person conference was changed to a virtual one in light of the COVID-19 global pandemic and is now set for November 14 – 16. Doctors and scientists from the nation’s top medical research centers will present information on LBSL management, gene therapy, the latest scientific discoveries and much more. Register today!