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: Help for Today, Hope for Tomorrow
In April 2018, the Kennedy Krieger Institute, one of the world’s premier neurogenetic research and treatment facilities, and the nonprofit patient advocacy organization “A Cure for Ellie” teamed up to host a groundbreaking conference specifically for patients and doctors interested in or affected by LBSL. The two-day event was attended by dozens of people from across the globe. Speakers presented information to help those living with LBSL manage their condition. Attendees heard from some of the world’s top doctors and scientists specializing in leukodystrophies. There was also time set aside for group discussion among patients, and for special one-on-one time with doctors during “Meet the Expert” breakout sessions. The next conference is set for May 2020 in Baltimore, Maryland. Stay tuned for more details.