On July 17 (KdVS Awareness Day) the Koolen-de Vries Syndrome Foundation kicked off the 2019 Kool Kampaign for Research. 

As many of you know, Reid was diagnosed with KdVS, a microdeletion of his 17th chromosome, in 2015, shortly after he was born. Reid is doing so wonderful, but he has many ongoing health and developmental issues, as well as many unknowns about his future. And with less than 500 diagnosed individuals in the world, research is critical!  These Kool kids mean so much to our family that we are joining forces to raise money for this worthy cause! 

In 2018, $50,000 was raised for research and we are hoping to blow that goal out of the water. Every dollar raised 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. While the research on these projects will continue, WE have the opportunity to ACCELERATE the speed at which these studies can be completed! 

Thank you so much for your continued support for Reid, our family and all of his Kool friends! 

Read about KdVS at kdvsfoundation.org.