My Nonprofit Reviews

The first time we read the words “Okur-Chung Neurodevelopmental Disorder” on a genetic test report in 2019, we finally had an answer to questions we'd had since our child's birth. Prior to this diagnosis, our child had received diagnoses of low muscle tone, reflux, global developmental delay, speech delay, selective mutism, anxiety, binocular vision dysfunction, and autism. As a Syndrome with only two hundred diagnosed individuals worldwide, at first, we felt very alone. We were quickly welcomed into a family, however, by the CSNK2A1 Foundation. When you have an ultra rare genetic condition, most doctors and therapists have never met someone with your diagnosis. As a parent, this gives you the added pressure of becoming the expert. The CSNK2A1 Foundation provides parents and family members of those with OCNDS the tools and support to undertake raising awareness, fundraising for research, and educating doctors, therapists, and teachers, all to obtain the best care possible for your loved one with OCNDS. By uniting us as a family, no matter our physical distance, the Foundation propels our group mission of advancing research, education, awareness, and support for all our loved ones with OCNDS worldwide.

KultureCity is doing so much to raise awareness and provide services to kids on the autism spectrum like mine. Their new app helps me prepare against wandering and find sensory friendly places. Thank you KultureCity!