In an effort to leverage resources and take advantage of synergies, the patient advocacy groups IDefine, Koolen-de Vries Syndrome Foundation, and SETBP1 Society are teaming up to offer a webinar series […]
This week, we’re featuring Kool Warrior Jean-Karol! He’s 15 years old and lives in the South of France! Jean-Karol has two brothers that he loves playing LEGOs with. He also […]
Meet this week’s Kool Warrior, Wyatt! Wyatt is 5 years old and loves to snuggle with his mom. He is a big lover of the outdoors and enjoys going on […]
Meet this week’s Kool Warrior, Summer! Summer is 14 years old and loves to dance and go horseback riding! She’s about to be a big sister soon and is so […]
Meet this week’s Kool Warrior, Aaron! Aaron is 4 years old, but turns 5 on April 25th! He loves to dance and likes playing outside. He’s very friendly to everyone. […]
Meet this week’s Warrior, Déborah! Déborah is a 22 year old driven Kool Individual waiting to break into the workforce at a local center for disabled adults. She loves watching […]
On Wednesday, March 21, 2022, Anouk Verboven will be defending her thesis titled “Transcriptomic and Functional Phenotyping of Human Neurons: Towards a Therapy for Koolen-de Vries Syndrome.” She’s dedicated her […]
This week we’re featuring Kool Warrior Mirabel! Mirabel is the 10-year-old daughter of our own KdVS Foundation Board Member, Alayna! Mirabel was diagnosed with KdVS at just 3 months. She […]
A Mama’s Heart – Showing the World Differences are Worth Celebrating
Hi, my name is Becky. I’m from the UK. I am a proud wife to my husband Carl and mother to my three beautiful children, Isabella, age 3, Josh, nearly […]
Meet this week’s Kool Warrior, Bec! Bec is 38 years old and recently had a birthday! She has a passion for writing (keep an eye out for an article she […]
