Family Stories
Explore the emotional journey of families facing Okur-Chung Neurodevelopmental Syndrome. Join our advocacy efforts for awareness and research.
Discover a heartfelt story of connection and belonging as two teens with Okur-Chung Neurodevelopmental Syndrome form a meaningful friendship.
Read a Colorado mom's story on advocating for genetic testing & care for Okur-Chung Syndrome. Join the fight for better access today!
Read about KK's journey of courage with Okur-Chung Syndrome. Join us in supporting her progress and celebrating her milestones.
Review insights from the Sibling Panel on Okur-Chung Neurodevelopmental Syndrome. Join us in supporting affected families.
A Year in Review: Key 2025 milestones and progress from the CSNK2A1 Foundation in research, advocacy, awareness, and family support for the OCNDS community.
Learn how community support helps children with Okur-Chung Neurodevelopmental Syndrome thrive. Advocate for growth & opportunities today!
Elizabeth McNamee shares her advocacy for Okur-Chung Neurodevelopmental Syndrome. Join her in pushing for better support & research.
Learn about the CSNK2A1 Foundation's efforts to find a cure for Okur-Chung Syndrome. Join us in advocating for affected individuals worldwide.
Do you have a story to share?
Your experiences help others feel seen, supported, and understood. Whether it’s a milestone, a challenge, or a reflection — we’d love to feature your story. Submit your story here.