Hope. Community. Collaboration. Understanding. Cure.

CSNK2A1 Foundation is 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.

Newly Diagnosed

Okur-Chung Neurodevelopmental Syndrome is a rare genetic syndrome first identified in 2016.

OCNDS is caused by a mutation in the CSNK2A1 gene which is located on Chromosome 20. The gene CSNK2A1 creates a protein called CK2 which plays a crucial role in development. A mutation in this gene disrupts typical development.

Everyone with OCNDS has some degree of developmental delay and/or differences in brain function
More than 340 patients worldwide have been diagnosed with OCNDS so far. This number is expected to increase with increasing utilization of WES in other regions of the world
OCNDS is caused by heterozygous mutations in the CSNK2A1 gene on chromosome 20
OCNDS affects both males and females
OCNDS estimated prevalence is 1 in 100,000 meaning that for every 100,000 people, 1 will have OCNDS. This data is derived from a publication extrapolating the relative incidence of rare diseases vs. others with known incidence (ncbi.nlm.nih.gov/pmc/articles/PMC9687899). The data for the CSNK2A1 gene is located in the supplemental tables
There is not a definitive cure for OCNDS yet
Find answers to common questions asked by OCNDS families here
Review our Clinician one-pager for quick facts about OCNDS

This Giving Tuesday, give the gift of hope. Children and adults with OCNDS need more support, more understanding, and more answers than currently exist. Your support helps us push forward the work that can change that. This December, we are working to raise $150,000 to accelerate OCNDS research. And thanks to the extraordinary generosity of Joan and Charlie Davis, every gift this month is matched dollar-for-dollar up to $50,000, doubling your impact.

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