As most of you already know, Marissa was diagnosed with Koolen deVries Syndrome in 2015. It finally gave us a  reason for all of her medical struggles and delays. Though she is doing well now, Marissa still continues to have medical issues, as she will be having spinal cord surgery this fall.  

A few weeks ago we all had the privilege of attending the Koolen deVries Advocacy Summit in Utah. Each time we attend we continue to be amazed especially at the amount of research being done. Most notably on the drug therapy research that eventually could greatly improve the quality of Marissa’s life! But we need your  help, as funding is greatly needed! 

In addition to sharing this encouraging news we wanted to make you aware that July 17th is KdVS Awareness Day! 

The Koolen-de Vries Syndrome Foundation is kicking off the 2019 Kool Kampaign for Research. In 2018, $50,000 was raised for research and we are hoping to blow last years goal out of the water. One hundred percent of the donations received will be used to support KdVS research. Some of the research projects that are either currently underway or may require funding soon, include: drug therapy research; KdVS mouse socialization study; epilepsy and MRI research; collection and analysis of medical data through the GenIDA organization;  3D photography for facial recognition. 

With your help WE have the opportunity to ACCELERATE the speed at which these studies can be completed! Read about KdVS at kdvsfoundation.org.

Thank you!