We know this is an overwhelming time. It is difficult to know where to begin. As you are navigating this new diagnosis, here are steps you can take to get informed, connected and make an impact today!
One of the top concerns for caregivers and parents of a child living with OCNDS is who will care for the child when caregiver or parent dies.
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.
We are focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome and ensuring affected individuals have the opportunities and supports necessary for happy and full lives. CSNK2A1 Foundation is operated and funded through a committed team of volunteers, advocates and researchers.
We are a 501(c)(3) non-profit organization. EIN #82-4220939.
© 2023 CSNK2A1 Foundation
1929 Van Ness Avenue
San Francisco, CA 94109
(415) 483-2488
The information provided is not intended to be a substitute for professional medical advice, diagnosis or treatment. Never disregard professional medical advice, or delay in seeking it, because of something you have read on this website. Read more...
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