Our Published Work

Since our creation in 2022, we have worked deliberately to expand the information available to families, clinicians, and researchers. Before our foundation existed, most detailed knowledge about CASK-related disorders lived only in complex scientific papers — valuable, but often inaccessible, and rarely answering the practical questions parents urgently need addressed. As parents of children with CASK, we understand those gaps firsthand. We know what information families look for, what clinicians need clarified, and where researchers benefit from clearer, patient-centred insight.

Our goal is to bridge those gaps. We collaborate on research, develop accessible educational materials, and publish resources that translate scientific knowledge into clear, actionable information. Everything we produce is designed to be freely available, easy to understand, and grounded in real-world experience. Below you'll find our published work — from peer-reviewed papers to infographics and community-driven research — created to support and empower the global CASK community.