On KdVS Awareness Day, July 17th, the Koolen-de Vries Syndrome Foundation kicked off the 2020 "Kool Kampaign" for Research. 

Colby was diagnosed with KdVS in 2007, only a year after the syndrome was discovered and at that time there was little known about it. We have come so far since then with the formation of the KdVS foundation which has hosted two Patient Advocacy Summits featuring speakers and researchers from all over the world. Another Summit is planned for the summer of 2021 in Orlando, FL. 

The foundation has raised over $130,000 in the last two years for KdVS research. A number of research projects are currently underway and one of those studies is testing drug therapies that could help KdVS individuals in the future.

Colby has a zest for life and has truly been a blessing to all those who know him. We are very thankful for the continued support of our family and friends. 

Patty, Steven, Colby & Taylor