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 […]
READ MOREKool 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 […]
READ MOREKoolen-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 […]
READ MOREFor 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 […]
READ MOREEthan 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 […]
READ MOREOn 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 […]
READ MOREOn 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 […]
READ MOREKool 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, […]
READ MOREOn 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 […]
READ MORENovember 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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