On July 17 (KdVS Awareness Day) the Koolen-de Vries Syndrome Foundation is kicking off the 2019 Kool Kampaign for Research.  The Kool community means so much  to our family.  As most of your know, Lily was diagnosed with KdVS, a microdeletion of her 17th chromosome, in 2013, shortly before she turned 2.  She is doing so phenomenally well, but there are still so many unanswered questions.  With less than 500 individual diagnosed in the whole world, research is critical.

We've decided to join forces and raise money for groundbreaking KdVS research. In 2018, $50,000 was raised and we are hoping to blow last years goal out of the water. One hundred percent of the donations received through this Kool Kampaign will be used to support KdVS research. A number of research projects are either currently underway or may require funding soon, including: drug therapy research; KdVS mouse socialization study; epilepsy and MRI research; speech and language studies; collection and analysis of medical data through the GenIDA organization; scoliosis research; 3D photography for facial recognition. This research could give us answers and direction for Lily and many of our Kool friends.  While the research on these projects will continue, WE have the opportunity to ACCELERATE the speed at which these studies can be completed! And your donation will help! 

Read  more about KdVS at www.kdvsfoundation.org.  We are going to be sharing more about Lily, our journey and current research as  we go.  Thank you, as always, for your tremendous support.