The “Fairlington 5K” attracts hundreds of runners from around Virginia, Washington D.C., Maryland and beyond. In 2019, the two events raised a combined $35,000 for research. Next year’s race will take place late-April 2020. Click here for more information.
Sips, Sweets & Jewels at Kendra Scott
On July 19, Kendra Scott of Fairfax hosted it’s second annual “Kendra Gives Back” event for Ellie. Dozens of our supporters came to sip champagne while shopping her exclusive brand of colorful, coveted jewelry. Kendra donated 20 percent of all sales that night to the cure effort – which came to nearly $1,000! We will definitely be doing another event with them in Summer 2020. Stay tuned for details.
#GivingTuesday is an 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, “Black Friday” and “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.
LBSL Conference: Connection, Collaboration, Cures
“A Cure for Ellie” and the Kennedy Krieger Institute are once again teaming up to host a groundbreaking conference specifically for patients and doctors interested in or affected by LBSL. Set for My 28-30 in Baltimore, Maryland, this important three-day event will be attended by dozens of people from across the globe. Doctors and scientists from four of the nation’s top medical research centers will present information on LBSL management, gene therapy, the latest scientific discoveries and much more. There will also be time set aside for group discussion among patients, and for special one-on-one time with doctors during our “Meet the Expert” breakout sessions. Register today!