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June 2019
2019 KdVS Patient Advocacy Summit
We are pleased to present the 2019 KdVS Patient Advocacy Summit in Park City, Utah on June 27-29, 2019. Learn from top scientists, meet other families and Kool kids and enjoy the beautiful Utah mountains!
Find out more »July 2019
October 2019
2019 KdVS Triathlon
Raise awareness for Koolen-de Vries Syndrome and show your support for all of our hard-working friends living with KdVS! **T-shirts are being ordered and registration has closed for the 2019 event. Our athletes are all hard at work logging miles! Join Koolen-de Vries Syndrome Foundation in our 2019 “Tri” to be Kool Virtual Triathlon! This is our fourth annual Triathlon and this year all proceeds from the event will benefit a current KdVS Research Project investigating the syndrome on a cellular level.…
Find out more »July 2020
2020 Kool Kampaign Virtual Meeting
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 to reach out to your family, friends and social media contacts to ask them to join us in raising money for research. Join us on…
Find out more »October 2020
2020 KdVS Triathlon
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 triathlon can be completed from anywhere around the world between October 17 and November 17. Required distances are uniquely set (1.7 mile swim, 21 mile…
Find out more »Family Yoga Fundraiser
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 and access to our Kids Yoga Playlist! All proceeds will be donated to the Koolen-de Vries Syndrome Foundation! CPY Co-Owner Christina daughter was diagnosed with…
Find out more »December 2020
Dr. Angela Morgan Webinar
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 us at ashley@kdvsfoundation.org by 12 PM EST on Saturday, December 5. We will answer questions as time allows. Dr. Angela Morgan leads the Speech and…
Find out more »February 2021
Webinar with Dr. Ken Myers
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.
Find out more »April 2021
Webinar with Dr. Koolen
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 ashley@kdvsfoundation.org. We will answer questions as time allows. Registration link below!
Find out more »May 2021
Webinar with Dan Morreale
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 the webinar registration page or email us at ashley@kdvsfoundation.org. We will answer questions as time allows. Registration link below!
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