The Mission of the Kool Kid Alliance
is to promote awareness of Koolen-deVries Syndrome (KDVS), and to assist families and caregivers of persons with KDVS with medical expenses, assistive technology, and other resources needed for medical, developmental, emotional, and educational growth.
Hello, and welcome to the Kool Kid Alliance website! We are all excited about our new endeavor and our future of helping those with Koolen-de Vries Syndrome (KDVS).
For those of you who are new to the KDVS community, I would like to give you a little history of how we came about. In 2013, my wife Stephanie and I, along with our children, were blessed to attend our first “Kool Kid” Gathering in Indiana. A gathering is hosted by a family who has a child with KDVS. Gatherings are typically three days long and families from all over the world get together to meet other KDVS families and Kool Kids.
What I saw that first day was amazing and overwhelming to me. Our son Austin is a Kool Kid and when he walked into the hotel he saw another Kool Kid for the first time and he immediately ran over to him. My wife and I were in awe of the immediate connection they had.
Over the next three days, we met families and Kool Kids that would change our lives forever. We came to realize just how amazing, loving, and fun our Kool Kids are! The following year we attended our next gathering in Dallas, Texas which was another wonderful experience.
However, I noticed at both gatherings that many families didn't participate in some of the planned activities due to finances. I told my wife that I wanted for us to host the next gathering in 2015 so that we could make it affordable to as many families as possible. And so our journey began!
We reached out to businesses and friends in our community to help us. We reached out to doctors and specialists, our local hospital, and many more…the response was wonderful and we were truly blessed! We had a Kool Kid Family get in touch with Dr. Zolty and his assistant Tim. Through their organization, they developed a sleep study questionnaire to research the sleep patterns of our Kool Kids, since many of them suffer from sleep apnea. Dr. Koolen asked us to locate a local doctor to perform skin biopsies on some of the Kool Kids for his research. Our son’s genetics team from Dr. Alan’s office including, Dr. Chad Haldeman'englert, Dr. Jack Tarleton, and genetic counselor Carolyn Wilson assisted in the study. They came on their own time and with their own equipment/resources to perform the biopsies.
Supporting Families with Koolen-de Vries Syndrome (SFKDVS), a non-profit dedicated to raising awareness and supporting research of KDVS, paid for those biopsies to be cultured prior to shipment overseas. We were also fortunate to have Dr. Delahoussaye perform free eye exams for all the Kool Kids that needed them. The medical community was gracious and supportive of our endeavor and the support did not end there. The funds Stephanie and I raised for the 2015 Kool Kid Gathering allowed us to help KDVS families participate in all of the weekend activities.
We were able to purchase four tickets for the majority of the families to go to Dollywood, pay for a gem mining expedition, visit the Cherokee Indian Reservation and participate in a cultural presentation with free lunch, see a movie in a theater that was dedicated solely to KDVS families (with lunch), and have the largest gathering yet, with over 60 families from around the world! It was then Stephanie and I decided we wanted to be able to help these families more than just this one time especially since the costs associated with having a child with specials needs are astronomical and insurance only covers so much. I saw how my wife was struggling when we first met and I’ve seen how others struggle just to get the necessities for their children. With your help, we can make a difference in the lives of Kool Kids!
Thank you in advance for your interest & participation in Kool Kid Alliance.
Kool Kid Alliance
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