Last year, the Kool Kampaign for Research raised over $87,000! In these tough and strange Covid-19 times, we understand that situations are different. But, if you are able and inclined, we would appreciate your support!

Mirabel's latest health issue has left her almost completely non-verbal and not understanding spoken word. She is comprehending pictures and actions. It has been challenging, devastating and frustrating for us to see the years of hard work that are missing. Trying different medications and watching the side effects on her body is no fun for anyone. 

Just today, our Board of Directors met with our Medical Advisory Board to hear updates on research and talk about fundraising, funding of projects and reaching our community. There is so much exciting research happening. The doctors said that they are moving forward (minus some Covid related delays) but research is expensive and more funding = faster turnaround. 

One hundred percent of the funds raised for research are granted for KdVS research projects! Your support, your love and your spreading of Koolen-de Vries Syndrome awareness is so very appreciated by our family.

Much love, Alayna, Ryan, Mirabel, Emmeline & Willis