The Koolen-de Vries Syndrome Foundation and The Kool Kid Alliance are thrilled to have had the support Dr. Bert de Vries as he ran the New York City Marathon on November 4, 2018 to raise awareness for Koolen-de Vries Syndrome! Dr. de Vries approached both organizations about finding a way to use his race to raise money, promote awareness, support research, and assist Kool Families. Although these organizations maintain different missions and serve different purposes, they joined forces for the KOOLEST cause – to support our KOOL Doc, and have a little fun in the process.
Dr. Bert de Vries had a fantastic race. Many thanks to Bridget Green of the Kool Kid Alliance for doing Facebook Live pre-race and post-race interviews with Dr. de Vries. These interviews were live within the closed family support group on Facebook and many families had the opportunity to view them. We learned fun facts such as what he eats for a pre-race meal (cereal) and how many marathons he has competed in (this was number 6!).
A number of Koolen-de Vries Syndrome families gathered at mile 17 of the marathon to cheer for Dr. de Vries. Families around the world were able to watch his joyful smiles, high fives and hugs via Facebook Live. It was exciting!
T-shirts are still available and Kool Kid Alliance and KdVS Foundation will gladly still accept donations! If you’d like to make a monetary donation in support of Dr. de Vries’ accomplishment, please donate here and send an email to firstname.lastname@example.org stating that you wish the donation to be part of Bets for Bert! (Sorry – we are working on an easier solution!)
Congratulations to Kool Kid Cole’s grandpa who won a Visa gift card and free complimentary registrations to the 2019 Koolen-de Vries Syndrome Foundation’s Patient Advocacy Summit.