My Kool Brother

07/17/2026

Today, on Koolen-de Vries Syndrome (KdVS) Awareness Day, we celebrate Davis and every incredible individual in the KdVS community.
A few years ago, we shared our short documentary, www.mykoolbrother.org, to help the world better understand this rare syndrome. As we continue working toward treatments and, one day, a cure, we would love your help. Please celebrate with us by sharing this film with your friends and family. Every share helps raise awareness, builds understanding, and brings new people into our mission.
We are so proud of Davis. He continues to make amazing strides, reminding us every day why this work matters. Thank you for standing with our family and the entire KdVS community. 💙 Together, we are creating hope for every child and adult living with KdVS.

03/26/2026

PURPLE DAY! Davis has epilepsy, but it does not slow him down. He takes medication twice a day, and we always carry anti-seizure medication with us. Every call from the school starts with, “this is not an emergency…” because they know that is the first thing on our mind.
We got a service dog, Delta, after four big seizures in one year—each lasting over four minutes. We were scared we were heading toward constant seizures. Thankfully, our path took a different turn, and Davis has now been seizure-free for four years (🤞).
We still do bi-yearly 24-hour EEGs. He actually loves them because we turn it into a little adventure—staying in a hotel and ordering room service! Even though his EEGs still show some dysfunction, and he remains on a high dose of medication, and continues to face cognitive delays, none of that defines him.
He sleeps with Delta by his side, and more than anything, he is a happy kid—full of life, joy, and resilience.

10/27/2025

We love the Special Olympics Fall Games.

10/27/2025

Davis had a wonderful day at Special Olympics. Over 350 kids came out to enjoy the sunshine and games together. He played football, soccer, ran relay races, danced and more! Thank you to all of the volunteers for making this wonderful day happen. Davis looks forward to it every year!

03/26/2025

Today on Epilepsy Awareness Day, we celebrate Davis and all of our friends who have epilepsy. Davis suffers from nocturnal tonic clonic seizures (the big ones you see on tv.) Davis’ seizures always last over 5 minutes and require emergency medications to stop them. They are big and scary and happen at night. We have a seizure detection device (looks like a watch) and a specially trained service dog to catch these seizures. To learn more about epilepsy and KdVS please watch our short documentary

Davis Out Of The Unknown Davis Out Of the Unknown: A Documentary Free Get inspired by the uplifting story of 7-year-old Davis Point's battle with Koolen-de Vries Syndrome in the international award-winning impact documentary. Follow Davis & his family as they fight for a cure and a new normal, and s...

11/19/2024

Today I had the privilege of talking with student teachers interested in special education at UNCW's Watson School of Education. We discussed complex medical needs, intellectual disabilities, therapies, sibling relationships, communication and so much more. They are the future of education for Davis and so many learners and it was exciting to hear their true enthusiasm and understanding of educating a child with special needs. Thank you to Sharon Richter for inviting me to be a small part of their learning.

11/17/2024

We are thrilled to announce that Davis Out of the Unknown is now on the . We hope this partnership will bring renewed light to KdVS and the promising research that we are committeed to bringing to the community.

07/10/2024

We're grateful for the feature in StarNews this weekend, showcasing our documentary. Our goal is to find a treatment for KdVS. My Kool Brother is committed to being a driving force in KdVS research, and we believe that every donation brings us one step closer to a cure. Join us in the fight for a brighter future for Davis and all those affected by KdVS. Together, we can make a difference! StarNews My Kool Brother

When Dana and Ashley Point's son Davis was diagnosed with a rare genetic disorder, they set on a mission to raise awareness and find a cure.

02/29/2024

It's Rare Disease Day! Today we celebrate Davis and all of our rare disease friends and families.
1 in 10 people suffer from Rare Disease
300 million people live with a Rare Disease
72% of Rare Diseases are genetic
Davis has Koolen-de Vries Syndrome (KdVS). In Davis, KdVS causes speech and cognitive delays, epilepsy, hypotonia, and respiratory issues. Davis experienced a stroke when hospitalized with RSV and now suffers from right-field blindness.
Please share our 12-minute award-winning documentary to spread awareness about KdVS and our family's fight for a treatment!