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Understanding
Okur-Chung Neurodevelopmental Syndrome

Share Your Story

Stories have the power to change hearts and minds. A story can be a powerful tool for helping bring awareness and acceptance to those living with OCNDS. Your story has the power to help those feeling alone and isolated feel heard and seen. Tell us your OCNDS story and we’ll feature it on the CSNK2A1foundation.org blog!


Complete this form and share your journey with us. It can be as short as one or two paragraphs. To help you get started, check out these inspirational stories on our blog.


Photos and videos bring your story to life. Upload photos and videos directly in the form, or email them to info@csnk2a1foundation.org


Here are some prompts to consider:


When was your child diagnosed with OCNDS? How did you feel when you heard the diagnosis?


  • What does it mean to your family to find an OCNDS community?
  • How does OCNDS affect the daily life of your child? What are their challenges? Their strengths?
  • What hopes do you have for your OCNDS child’s future?
  • How would a treatment or a cure change your family’s life? Why is treatment or a cure important to you?
  • What piece of advice would you give other OCNDS families who are newly diagnosed?


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