KDVS Foundation

Enriching lives through education, awareness and research.

KDVS Foundation

Enriching lives through education, awareness and research.

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

Join us on Zoom January 16, 2022 at 8 pm ET for an Emotional support group for KdVS parents/caregivers. What’s been the most difficult part about being a KdVS parent? How do you cope?

Call for Volunteers!

KdVS Foundation is run entirely by volunteers. A number of volunteer opportunities are available.

Visit our What is KdVS page for more videos!

OUR LATEST

KDVS NEWS

By Alayna

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Kool Warrior – Kimber

Meet this week’s Kool Warrior, Kimber! Kimber is a hard working 3-year-old who is working on new words. In addition to having KdVS, she’s currently battling a brain tumor. That doesn’t slow her down, though! She loves dancing and music and is a huge fan of her sister, Kallie. Kimber also loves animals! If you […]

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Kool Warrior – Mariachiara

Meet our first Kool Warrior of 2022, Mariachiara! Mariachiara loves Peppa Pig and laughs a lot when her mom sings her favorite Peppa Pig songs. She really likes the sea of Sicily where they go for holidays. Mariachiara enjoys riding her special bike with her mom, and is always ready to eat! If you would […]

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By Alayna

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By Alayna

0 Comments

Kool Warrior – Willie

Meet Kool Warrior Willie! Willie is 19 years old and lives in Portland, Oregon. He is a HUGE sports fan and will impress anyone with his knowledge of facts & sports IQ. He has a sister and a brother who he loves dearly. Willie was diagnosed with KdVS at age 14 in January 2017 thanks […]

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CHECK OUT OUR UPCOMING EVENTS

12

KdVS Connect – Regional Groups 12:00 PM

Join us for KdVS Connect on February 12, 2022 at 12 pm ET. This month’s theme is connection within your geographic region. Registration link below – make sure you tell us where you are joining our Zoom call from (Europe, Australia/New Zealand, Central/South America, Africa, Asia, or if inside the USA, please specify general region).

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13

Mar

KdVS Connect – Young Adults & Parents 8:00 PM

Join Koolen-de Vries Syndrome Foundation for a virtual Zoom event. March 13, 2022 at 8 pm ET – KdVS young adults and their parents are invited to discuss transitions to adulthood and independent living. Don’t forget to register!

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09

Apr

KdVS Connect – Verbal Speech Discussion 12:00 PM

Join the Koolen-de Vries Syndrome Foundation for a virtual KdVS Connect zoom call. On April 9, 2022 at 12 pm ET, attendees will have the chance to discuss all things related to speech. What works or has worked for your Kool Kid? How has communication changed or improved with age? Don’t forget to register!

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22

May

KdVS Connect – Navigating Kool Kid Participation 8:00 PM

Join the Koolen-de Vries Syndrome Foundation for a virtual support group on May 22, 2022 at 8 pm ET. Discussion will revolve around navigating Kool Kid participation with neuro-typical groups in school, sports and making friends. Don’t forget to register!

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