On July 17 (KdVS Awareness Day) the Koolen-de Vries Syndrome Foundation is kicking 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. 

A number of research projects are either currently underway or may require funding soon. This research could give us answers and direction for Lily and her Kool friends. 

Lily continues to grow, learn and inspire us all! At 2 years old, the doctors told us, "we HOPE that Lily will one day walk."  WOW...how far she has come!  She has had a fantastic year of development, in spite of all of the losses that came with COVID-19.  Lily moved to a new school this year where she made lots of new friends.   She is reading and loving short chapter books and learning alongside her peers (both in person and even on her class calls)!.  She still enjoys riding her bike, playing soccer and swimming! And her latest and greatest feat has been a love for roller skates!! Most of all, she loves being with friends and family! We did have a couple of big scares with some long-lasting, terrifying seizures.   We continue to navigate the epilepsy journey but seem to have seizures under control since that time in November.  

We are so fortunate to have a team of experts across the world who are actively researching Koolen-de Vries Syndrome and so many of the affected areas.  Our family has actively been involved in many of the research projects.  With such a rare disease, they need all of the infomation they can get. And we are so eager to learn more so that we can help our fiesty little red head to live her best life...along with all of her Kool friends!

 While the research on these projects will continue, WE have the opportunity to ACCELERATE the speed at which these are accomplished.  We know that this research will have a direct impact on Lily, our family and many of her Kool friends.  Read more about KdVS and the current research projects at kdvsfoundation.org. 

 Thank you for your tremendous support, always! Truly, our family and our friends are unbelievable and we wouldn’t be where we are today without all of you. We recognize that this this year has brought challenge to so many...we appreciate your love and support.  

With much gratitude,

Marci and Josh, Brendan, Jackson and of course, Lily