Giving Tuesday November 27th!
This Giving Tuesday (Nov. 27) help us raise $50,000 to cure LBSL, a rare, degenerative brain disease that robs kids of the ability to walk, then stand, then coordinate all fine and gross motor skills. Medical research is underway at Kennedy Krieger Institute to cure LBSL, a.k.a. “Awesome Disease.” $50,000 will keep this lifesaving work going well into 2019. Your support means Ellie and kids like her can keep doing “the floss” for years to come! Donations are matched by Facebook & PayPal up to $7 million! DONATE
Sips, Sweets & Jewels at Kendra Scott
Kendra Scott of Fairfax hosted a special private shopping event to benefit “A Cure for Ellie.” Nearly 100 ladies came out to sip campaign while shopping their exclusive brand of colorful, coveted jewelry. Kendra donated 20 percent of all sales that evening and helped us raise $1,700 toward the cure effort. Thanks to all who came out to support us that evening. We will definitely do this event again next summer. Stay tuned for details.
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.