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.

Help us change the world by donating!

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.