Each year in April, Ellie’s friends and neighbors host a 5K Race & 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 two events raised a combined $30,000 for research. This year’s race is set for Saturday, April 27. Click here to register.
The Silent Auction will take place at the Fairlington Villages Community Center Friday, April 5. Over 100 items are up for bid, including vacation packages, professional sports tickets, rare wine collections and much, much more. Admission is free and adult beverages and light snacks are provided. Doors open at 6:00 p.m. and bidding starts at 7:00 p.m.
Sips, Sweets & Jewels at Kendra Scott
Kendra Scott of Fairfax is hosting another special private shopping event to benefit “A Cure for Ellie” on Friday, July 19. Last summer, nearly 100 ladies came out to sip champagne while shopping this exclusive brand of colorful, coveted jewelry. Kendra will donate 20 percent of all sales to the cure effort. Mark your calendars and 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 will be matched by Facebook & PayPal. Stay tuned for details on our 2019 #GivingTuesday campaign which will launch December 3.
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.