Koolen-de Vries Syndrome was first identified and reported upon in 2006. Since that time, so much has changed - an official name for the syndrome, epilepsy research, speech and language research, further characterization of the syndrome, family support groups and our non-profit was founded. The Koolen-de Vries Syndrome Foundation is proud of our mission to help fund research, which is so vital as we continue to learn more about the syndrome that affects 1 in 55,000 of our children, loved ones and friends.

In June of 2019, KdVS experts from around the globe gathered with KdVS families at our Patient Advocacy Summit. At the Summit, doctors had the opportunity to present their research. The overwhelming response was that they were INSPIRING, COMMITTED, PASSIONATE AND POWERFUL.

Dr. de Vries's message was, "WE NEED RESOURCES." We need YOUR help to advance the research to the next level. The foundation hopes to fund the following projects with your help:

- KdVS Drug Therapy Research

- Collection and analysis of medical data through GenIDA organization

- KdVS Mouse Socialization project

- Epilepsy and MRI research

- Speech and Language studies

- Scoliosis Research

- 3D Photography for Facial Recognition

In 2018, with your help, we were proud to raise $50,000 to send to the doctors to help fund their amazing research. Our current goal is to raise $60,000, which would be enough to fund an additional year of a PhD student dedicated to researching Koolen de-Vries Syndrome. With your help, we are confident that we can reach this goal and possibly surpass it to raise even more money for research funding. How Kool would that be?!

For more information, please visit www.kdvsfoundation.org

If you or a loved one is considering a larger gift, please contact us at donations@kdvsfoundation.org.