3 Nov

Billy Footwear – Open Book Podcast

On November 3, 2021, KdVS Foundation president Ashley Point had the opportunity to join Billy Footwear on the Open Book podcast. She was able to raise awareness about Koolen-de Vries […]

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26 Oct

Child of the Year – Cabrini Hospital

Kool Individual Cole Wyatt has been chosen as Cabrini Hospital’s 2022 Children’s Miracle Network Child of the Year in Alexandria, Louisiana. Now 2-year-old Cole was diagnosed with KdVS only one […]

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14 Oct

New Medical Advisory Board Member

Koolen-de Vries Syndrome Foundation would like to announce the newest member of our Medical Advisory Board, Dr. Katie Pechek. Dr. Pechek completed her undergraduate degree in Athletic Training from Creighton […]

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22 Jun

$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 […]

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3 Jun

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 […]

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18 May

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 […]

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2 May

KdVS Foundation hosts webinar with Dr. Koolen

On April 30th, the Koolen-de Vries Syndrome Foundation hosted a webinar with Dr. David Koolen. There was an amazing turnout of viewers both on the Zoom call and following the […]

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1 Apr

Pawsitive Warrior Spotlight

Kool Miranda along with her service dog, Natasha, was featured on Shane & Pepper Soy Candle Company’s monthly newsletter. Six year old Miranda received Natasha through 4 Paws for Ability, […]

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15 Feb

KdVS Foundation hosts webinar with Dr. Myers

On February 10, 2021, Koolen-de Vries Syndrome Foundation hosted a webinar with Dr. Ken Myers, pediatric epileptologist, discuss epilepsy and KdVS. He shared an excellent presentation and answered many questions […]

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31 Jan

WBTV’s Molly Grantham features Elle

November 30, 2020 Charlotte based charity Bee Mighty raises money and hope for preemies. Elle, a twin, was not only born prematurely but also was diagnosed with Koolen-de Vries Syndrome. […]

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