Fairlington 5K & Silent Auction
Each year in April, Ellie’s friends and neighbors host a 5K race and silent auction to support the foundation’s mission of finding a cure for LBSL. The “Fairlington 5K” attracts hundreds of runners from around Virginia, Washington D.C., Maryland and beyond. In 2018, the events raised a combined $30,000. Nearly 700 runners participated in the race and 80 local business donated to the auction. For more information, please click here. If you would like to donate an item to the 2019 silent auction or become a sponsor for next year’s race, please contact us at ACureforEllie@gmail.com.
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. Stay tuned for information on the next conference which is tentatively scheduled for 2020.