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. For more information on this year’s race, please click here. If you would like to donate an item to the silent auction or become a sponsor for the race, please contact us at ACureforEllie@gmail.com.
LBSL Conference: Help for Today, Hope for Tomorrow
Kennedy Krieger Institute, one of the world’s premier neurogenetic research and treatment facilities, and the nonprofit patient advocacy organization “A Cure for Ellie” are teaming up to host the conference specifically for patients and doctors interested in or affected by LBSL. This two-day event will present information to help those living with LBSL manage their condition. We will bring together patients and families from around the globe to learn from one another and to hear from some of the world’s top doctors and scientists specializing in leukodystrophies. 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 session. For more information and to register, click here.