Leading the change for a cure
My Kool Brother was founded with the goal of developing better medical therapies and treatment options for individuals with Koolen-de Vries Syndrome (KdVS). We hope to accomplish this by working directly with researchers and pharmaceutical companies.
My Kool Brother was established in 2021 by Ashley & Dana Point. Their son, Davis, was diagnosed with KdVS in February 2016 at the age of 16 months after several hospitalizations.
We have a proven track record of working with researchers to advance the study of rare diseases and working with families to create long lasting support groups.
DAVIS OUT OF THE UNKNOWN
A SHORT IMPACT DOCUMENTARY ABOUT KOOLEN-DE VRIES SYNDROME.
Release Date: 2022 and screening in film festivals from Austin to Rome
Seven-year-old Davis Point grapples with a rare genetic disorder called Koolen-de Vries Syndrome. One seizure could change Davis forever, so his family pushes hard for a cure and a new kind of normal.
Koolen-de Vries Syndrome is a disease that affects every cell in the body and can result in intellectual and physical disabilities.
As you might imagine, that means it takes a community to support a child with Koolen-de Vries Syndrome (pronounced like Koolen da freeze). Every child deserves a happy, healthy life.