Understanding
Okur-Chung Neurodevelopmental Syndrome
Welcome!
Never doubt that a small group of thoughtful, committed citizens can change the world;
indeed, it’s the only thing that ever has.
Welcome! We found each other. FINALLY! Some of us have waited years for a diagnosis – a name to describe the condition that has affected our children, a name of a disorder that has silenced many of our children’s voices.
OKUR-CHUNG NEURODEVELOPMENTAL SYNDROME (OCNDS)
Now, finally, we can build our community. We are no longer alone searching in the late hours of the night, typing into a web search different symptoms that affect our children to find something, anything to give a name to what they are experiencing. We are no longer alone. We have each other. Our children are no longer alone. They have other children waiting to meet them that are just like them. We will be each other’s best teachers and best listeners.
We have come together to build this community to support our families and bring funding to new research. We welcome your stories and suggestions to create the kind of support community that will serve a wide range of families throughout the world.
Please join us on Facebook at our closed Facebook group for caregivers and providers to connect with our growing OCNDS community. It is a place to ask questions, post pictures, share successes and challenges and connect with other families. We look forward to connecting with all of you!