We are foundation for individuals and families affected by TAOK1
Get Involved
Every contribution brings us closer to better diagnosis, care, and treatment for children with TAOK1. You can donate, volunteer, or help us spread awareness. Join our cause and become part of the change.
Families
A TAOK1 diagnosis can feel overwhelming at first. We bring together families from around the world to share knowledge, offer support, and walk this path side by side. Here you'll always find people who truly understand.
Research
We fund and support scientific research into TAOK1. By connecting researchers with families who hold real data, we drive new studies forward and help shorten the path toward an effective treatment.
Help us search for a treatment
TAOK1-associated disorder was first recognized only in 2019, and today there is no treatment for it. That can change — but only if someone builds the foundation for the research. As a family-led foundation, that’s exactly what we’re doing: connecting families worldwide, making the science usable, and funding the early work that future treatments depend on. Every gift moves us one step closer to answers for our children. Will you help?
Our warriors
Latest From the Blog
What Is TAOK1-Associated Neurodevelopmental Disorder? A Guide for Families
If you’ve found your way to this page, you’ve probably just encountered a word that wasn’t in your vocabulary before: TAOK1. Maybe a geneticist said it. Maybe it appeared in your child’s test results. This article explains what the condition is in plain language – no jargon, just what you actually want to know at the beginning. A gene that helps build the brain Each of us has roughly 20,000 genes – instructions that tell our cells what to do. One of them is TAOK1 (short for Thousand And One amino acid Kinase 1). This gene codes for a protein
Call to Raise the Help
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Medical Camp
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