I am the mother of two beautiful children, Dustin and Adreanna. Both have OCNDS along with additional diagnoses, making their cases more complex. We have lived in Delaware for the last 3 years, and before that, we lived in Pennsylvania. After searching for answers for my children for 14 years, we received the OCNDS diagnosis in 2021. The CSNK2A1 Foundation has been so helpful, and right away, I knew I wanted to become involved in helping and supporting not only my children but other families receiving an OCNDS diagnosis as well. By joining the Parent Advisory Board, I also hope to help educate and bring awareness of OCNDS to doctors, therapists, teachers, and others in the community.
Understanding
Okur-Chung Neurodevelopmental Syndrome
Katie Keiser
PARENT ADVISORY BOARD
