Now Streaming!
Davis Out of the Unknown is now availabe in millions of home through the Disorder Channel. Just search for The Disorder Channel under streaming channel (as you would to add Hulu, Netflix, etc) on your Amazon Fire tv to add it to your device.
October 2024-My Kool Brother Founder and President, Ashley Point spoke with Patient Worthy about their diagnostic odyssey, the foundation, and ongoing research.
Star News
Family talks about life with their 'Kool' son to raise awareness of genetic disorder
Renee Spencer, Wilmington Star News
July 10, 2024
Like most 9-year-old boys, Davis Point loves to talk about Marvel superheroes.
Much of his occupational therapy sessions are devoted to the discussion of comics.
Davis was diagnosed with Koolen-de Vries Syndrome, also known by the acronym KDVS, in early 2016. He was 16 months old. The disease is caused by a genetic mutation and affects an estimated 1 in 30,000 people.
Dana Point, Davis’ father, explained that like autism, KDVS has a spectrum. Symptoms and their intensity vary, but some common ones are heart defects, dental abnormalities, developmental delays, low muscle tone, speech issues, and seizures.
Rare Revolution
Magazine
The Unknown
January 3, 2024 - Failure to thrive, missed milestones, recurrent respiratory infections, hospitalisations, hypotonia, physical therapy, medications, pulse oximeter, seizures, emergency medication. These were our new reality within the first year of Davis’s young life.
Davis was born a happy, albeit premature, little boy. At birth, we noticed several markers of a genetic disease, but they were brushed aside. He had his first seizure at 12 months and this finally opened the door to genetic testing and his eventual diagnosis of Koolen-de Vries Syndrome (KdVS). We were fortunate to have a short diagnostic odyssey of only 16 months at diagnosis….
North Carolina
Medical Society
October 13, 2023 - NCMS Welcomes 2023 Leadership College Scholar Dana Point, MDHear Dr. Point’s MedTalk: “Bolstering Awareness of Rare Disease through a Novel Approach“Dana Point, MD spoke before teh 2023 Leadership College about KdVS and the Davis Out of the Unknown documentary. Dana is raising awareness among the medical community about KdVS and rare disease.
The Rare Fair
September 7, 2023 - Davis Out of the Unknown was featured at the Rare Fair in Raleigh, North Carolina, USA. Ashley Point talked about her experience with rare disease after the showing.
WECT with
Frances Weller
February 9, 2023; WILMINGTON, N.C. (WECT) - After multiple film festival appearances, the short documentary Davis Out of the Unknown will have its first screening in North Carolina at the Lumina Theater in the University of North Carolina Wilmington’s Fisher Student Center on Feb. 15.
“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,” states a summary on the My Kool Brother website. “Koolen-de Vries Syndrome is a disease that affects every cell in the body and can result in intellectual and physical disabilities.”
My Kool Brother was founded by Ashley and Dana Point and aims to help develop treatments for people with Koolen-de Vries Syndrome (KdVS) by working directly with researchers and pharmaceutical companies.
The documentary features their son Davis and will be screened at a Feb. 15 event starting at 6 p.m. with a screening at 6:30 p.m. and a reception that ends at 9 p.m. The film has previously screened at NFFTY, Scout Film Festival, Austin Film Festival, Beyond the Short and the 3 Global Genes Conference, and won the Premio Speciale USR-Telethon Award at the Uno Sguardo Raro Film Festival (the European Rare Disease Film Festival.)
Uno Sguardo
Raro Film Festival
November 20, 2022 - Davis Out of the Unknown won the Premio Speciale USR-Telethon Award at the Uno Sguardo Raro Film Festival (the European Rare Disease Film Festival).
Austin Film Festival
November 2, 2022 - Davis Out of the Unknown was featured at the Austin Film Festival.
Global Genes
September 2022 - Davis Out of the Unknown was created through the Rarely Told Stories of Global Genes. Since it’s creation it has been featured at 3 Global Genes Conferences. Each time the film touches more families and a greater awareness is being made.
Beyond the Short
August 2022 - Davis Out of the Unknown was screened through Beyond the Short.
We’ve created Beyond the Short to celebrate independent cinema and to promote and inspire filmmakers around the world. Think of us as your 24/7 online film festival, putting a curated selection of visually striking and thought-provoking films at everyone’s disposal.
Beyond the Short is run by a close-knit team of filmmakers. We have been curating films for over a decade, starting our journey back in 2009 with a small channel on Vimeo called “Independent Filmmakers.”
Over the years, the channel has reached a fan base of 96k followers (and counting!).
NFFTY
April 29, 2022 - National Film Festival for Talented Youth Friday night shorts; Young filmmakers, Claire Gostin and Alex Casimir (both age 23) present Davis Out of the Unknown.