Alayna, Author at Koolen-de Vries Syndrome Foundation

8 Sep

Kool Warrior – Cesia

Kool Warrior Cesia is 7 and an only child, so she loves playing with her cousins. She loves dinosaurs and jumping on the trampoline. Cesia enjoys spending time at the […]

7 Sep

Kool Warrior – Daniel

Kool Warrior Daniel is 10 years old and a huge music fan. He loves singing, playing ukulele, and drums. He is almost riding without his training wheels. Daniel’s favorite person […]

1 Sep

Kool Warrior – Lucrezia

Kool Warrior Lucrezia is 13 years old, and has two older sisters. She also has a dog, Luna! Lucrezia loves the sea of Sperlonga near Rome, and is a HUGE […]

18 Aug

Kool Warrior – Bowen

This week’s Kool Warrior is Bowen! Bowen is two years old and is almost walking independently! He loves sports, but enjoys spending time at the hockey rink most. He has […]

4 Aug

Kool Warrior – Samantha

This week’s Kool Warrior is Samantha! Samantha is a recent high school graduate and a big fan of going to summer camp. In the fall Samantha will start a two […]

28 Jul

Kool Warrior – Lily

This week, we’re featuring our first Kool Warrior Lily! Lily is 9 years old and loves sports! She’s a huge fan of swimming and riding her 2-wheeler bike with friends. […]

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 […]

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 […]

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 […]

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 […]