My Nonprofit Reviews

I am the mother of a child who was diagnosed with OCNDS after 8 years of searching for answers to our questions about her symptoms. She had difficulty as a baby and toddler with walking, talking, hypotonia and eating. Now her difficulties are learning disabilities and Autism. The gap between her and her peers is widening and it is very isolating being a parent of a child with an ultra rare condition. Therefore we were delighted to discover that there was a CSNK2A1 Foundation providing advice, support, conferences and resources for our community. We are so grateful to the foundation for teaching us so much more about OCNDS and for providing us with a network of support, expertise and access to advice from other families to help us with this journey. This has been incredibly helpful in enabling us to understand and treat the symptoms of the syndrome, it has also given us ideas for what to look out for and what to expect in the future.