In 2019, the Koolen-de Vries Syndrome Foundation community teamed up to raise over $85,000 during the Kool Kampaign for Research. We blew past our $60,000 goal! On July 17, 2020 - Koolen-de Vries Syndrome Awareness Day - we are kicking off the 2020 Kool Kampaign for Research. You might be surprised how easy it is […]
Raise awareness for Koolen-de Vries Syndrome and show your support for all of our hard-working friends living with KdVS! Join the Cooper Family and Koolen-de Vries Syndrome Foundation in our 2020 “Tri” to be Kool Virtual Triathlon! This is our fifth annual Triathlon and this year all proceeds from the event will benefit KdVS Research projects. The […]
Charlotte Pop-Up Yoga is hosting a family-friendly yoga event! This 30-minute practice is ideal for families with children ages 4-10, but anyone and everyone will enjoy this fun flow! No yoga experience necessary. At the end we will discuss tips for home practice with kids and registration will include a Kids Yoga Home Sequence PDF […]
On Sunday, December 6th at 6 pm EST, Koolen-de Vries Syndrome Foundation will be hosting a webinar with Dr. Morgan where she will be sharing information about current research in speech therapy and communication resources for KdVS individuals. Have a question to ask Dr. Morgan? Submit it directly within the webinar registration page or email […]
More details and registration to come. February 10, 2021 at 10 am EST - join Koolen-de Vries Syndrome's Kaci Fisher as she and Dr. Ken Myers, pediatric epileptologist, discuss epilepsy and KdVS.
On April 30th at 12:00 PM ET, the Koolen-de Vries Syndrome Foundation will be hosting a webinar with Dr. David Koolen. If you have a question to ask Dr. Koolen, you may submit it directly within the webinar registration page or email us at [email protected]. We will answer questions as time allows. Registration link below! […]
On May 13th at 1:00 PM ET, the Koolen-de Vries Syndrome Foundation will be hosting a webinar with Special Education teacher and Kool Dad Dan Morreale. Dan will be discussing Individual Education Plans (IEPs) and planning for a successful school year. If you have a question to ask Dan, you may submit it directly within […]
Join us for a virtual meet up of Kool families on May 23rd, 2021 at 5 pm ET. We had a great time on our first Zoom meeting and families attended from all over the world. Attendees will be divided into smaller break-out rooms to allow easier networking. We would love to meet you!
Coming up on June 25th at 11am EDT, don't miss a conversation with Dr. Bert de Vries, clinical geneticist from The Netherlands, and member of the KdVS Foundation Medical Advisory Board. He will be sharing information about the current research into KdVS individuals. Register here:
Click on the registration button above to browse the agenda and speakers and to register! When can I register for the Patient Advocacy Summit? How much will registration be? What is the schedule? Will recordings be available to view?
