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Understanding
Okur-Chung Neurodevelopmental Syndrome

a logo for the csnk2al foundation

Understanding
Okur-Chung Neurodevelopmental Syndrome

Terri Jordan

PARENT ADVISORY BOARD

Terri Jordan

My son is 19 years old but received the diagnosis at age 16. I wanted to be on this board because I have been the parent that is like a deer caught in the headlights and not sure which way to turn. Getting a diagnosis later in life meant dealing with the different symptoms and finding therapies that would help my son grow. I am always looking for ideas and activities that can be implemented and expand the therapy experience to keep my child growing on his path toward independence. Getting the diagnosis later in life also meant becoming an advocate for my child and his possibilities. I am looking forward to sharing this knowledge with new parents.


I have been a small business owner for 17 years. They say “Necessity is the mother of invention”. I wanted my child to be able to help cook and I want him to work. After lots of research, I just recently launched a second business, called The Color Coded Chef, to help my child and others toward that goal. In my spare time, I love to sew. Over the years I have created items for special needs children in Ecuador and parents here at home.

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