Alayna, Author at Koolen-de Vries Syndrome Foundation

17 Apr

The Koolen-de Vries Syndrome Foundation selected for the Rare Epilepsy Partnership Award

For Immediate Release April 11, 2023 The Koolen-de Vries Syndrome Foundation selected for the Rare Epilepsy Partnership Award WILMINGTON, N.C. – The Koolen-de Vries Syndrome (KdVS) Foundation has been awarded […]

31 Jan

Chief Scientific Officer Announced

February 1, 2023 The Koolen-de Vries Syndrome Foundation is excited to announce that Dr. Anna Pfalzer, of Vanderbilt and COMBINEDBrain, has been hired as the Foundation’s first-ever Chief Scientific Officer. […]

6 Jan

Commercial featuring KdVS

Did you know that Cox Communications recently filmed and released an online commercial featuring three individuals diagnosed with Koolen-de Vries Syndrome? Thank you to Cox Communications and the Kool families […]

7 Dec

Kool Warrior Morgan

Meet Kool Warrior Morgan! Morgan is 18 years old and an only child. She’s working hard on getting her drivers permit, and she volunteers part time at a thrift store […]

30 Nov

Kool Warrior Alexis

Meet this week’s Kool Warrior Alexis! Alexis is 21 years old and she has a twin brother! She works in a coffee shop as cashier and greeter. Alexis loves children […]

21 Nov

One Kool Warrior’s Voice

Bec Tilley has a unique voice in the Koolen-de Vries Syndrome community as both a Kool Warrior herself and a mother to two very Kool children! Bec enjoys spending her […]

16 Nov

Kool Warrior Isra

Meet this week’s Kool Warrior, Isra! Isra is only 10 months old, but she is a crawling champ! She loves dogs and is very into clapping her hands. Isra is […]

15 Sep

Join the Contact Registry

The Koolen-de Vries Syndrome Foundation is passionate about preparing our community to be “research ready”. One critical step is having a contact registry of diagnosed families. Did you know that […]

31 Jul

A Conversation with Dr. Brooke Latour

20 Jul

Kool Warrior Isla

Meet this week’s Kool Warrior, Isla! Isla Mae is said to be quite the sassy little girl that loves to crawl in hyperspeed! Her favorite pastime is peek-a-boo, preferably at […]