In 2016, Davis was diagnosed with Koolen-de Vries Syndrome after suffering from seizures, numerous respiratory issues, physical and speech delays.  Since then, Ashley & Dana have become involved in the KdVS Foundation by joining the Board of Directors (Ashley) and the Medical Advisory Board (Dana).  We believe the Foundation is the best way to raise awareness and support researchers and other KdVS families. On July 17 (KdVS Awareness Day) the Koolen-de Vries Syndrome Foundation kicked off the 2020 Kool Kampaign for Research. The Kool community means so much to our family.  We've decided to join forces and raise money for groundbreaking KdVS research. One hundred percent of the donations received through this Kool Kampaign will be used to support KdVS research. In 2019, over $70,000 was raised and granted to the KdVS experts. This year, we hope to surpass that number! Multiple research projects are either currently underway or may require funding soon. This research gives us not only answers but possible direction and tailored therapies, as all KdVS are directly impacted by this science.  However, it cannot continue without your much needed support.  

Please read more about KdVS at kdvsfoundation.org and thank you for your tremendous support!