Upcoming Events

Join Us – Sips, Sweets & Jewels at Kendra Scott

Friday, July 27th
6:30 PM to 8:30 PM
Kendra Scott Store
2920 District Ave SUITE 125, Fairfax, VA 22031
(571) 253-7355

Kendra Scott will donate 20% of all proceeds during the timeframe of the event. Phone orders are accepted on the day of the event from those who are unable to attend or would like to support from afar. Kendra Scott will provide FREE Shipping for anyone who calls into the store if you mention “A Cure for Ellie” on July 27th.

I really hope we will see you there. You can RSVP to us directly at bfrigola@gmail.com.

And remember – if you are shopping from a distance – pick your pieces online, but then make sure to call the Fairfax, VA store on July 27 to place your order, and don’t forget to mention you are shopping with A Cure for Ellie. Browse by clicking here, and then dial (571) 253-7355 to order.

All proceeds will keep the LBSL research at the Kennedy Krieger Institute in Baltimore going. We have hope in our heart that a cure will be found soon.

 

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.