What is Koolen-de Vries Syndrome?

Koolen-de Vries Syndrome is a genetic syndrome caused by a deletion on the 17th chromosome at 17q21.31 or by a mutation of the KANSL1 gene. Find out more about the syndrome.

KdVS Connect - Emotional Support Group

Join us October 10, 2021 at 8 pm EST for KdVS Connect. This month’s zoom call is an Emotional Support Group. Topics to discuss will include: What has been hardest about being a KDVS parent? How do you cope?

Kool Kampaign 2021

The Kool Kampaign was an amazing success! $150,000 was raised for Koolen-de Vries Syndrome Research!

Visit our What is KdVS page for more videos!

OUR LATEST

KDVS NEWS

By Alayna

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$100,000 Grant Awarded

For Immediate Release June 22, 2021 Koolen-de Vries Syndrome Foundation Awards $100,000 Grant to Post-doctoral Fellow for Further “Brain-in-a-Dish” Research WILMINGTON, N.C. – The Koolen-de Vries Syndrome Foundation recently awarded a $100,000 post-doctoral fellowship grant award to post-doctoral fellow Dr. Brooke Latour for her work in neural development and neurodevelopmental disorders, and how it relates […]

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Navigating Life with Koolen-de Vries Syndrome

Ethan Deremer is 23 years old and was diagnosed with Koolen-de Vries Syndrome in 2014. He recently submitted a short essay and was featured on the Our Odyssey website. Our Odyssey connects young adults who are impacted by a rare or chronic conditions with social and emotional support in the hope of improving their quality […]

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By Alayna

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By Alayna

0 Comments

KdVS Foundation hosts a webinar with Dan Morreale

On May 13th, Koolen-de Vries Syndrome Foundation hosted a webinar with Special Education teacher and Kool Dad Dan Morreale. Dan discussed Individual Education Plans (IEPs) and planning for a successful school year. Viewers of the webinar submitted many outstanding questions and Mr. Morreale was able to answer as many as time permitted. Missed the webinar? […]

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CHECK OUT OUR UPCOMING EVENTS

20

Nov

KdVS Connect – Epilepsy Discussion and Support 12:00 PM

Join KdVS Connect’s monthly Zoom call to discuss all things epilepsy! Approximately 50% of individuals diagnosed with Koolen-de Vries Syndrome are also diagnosed with epilepsy. On November 20, 2021 at 12:00 pm EST, parents are invited to share their child’s epilepsy journey and learn from the experiences of other families. Get support, give support! What […]

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04

Dec

KdVS Connect – Grandparents Support Group 12:00 PM

Join us December 4, 2021 at 12:00 pm EST for a KdVS Connect just for all the Kool grandparents! This event is a virtual event, held through Zoom, so don’t forget to register!

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