Sign up to our Contact Registry

Registering with CSNK2A1 Foundation will help to keep you up-to-date on the latest information regarding OCNDS.

Contact Registrants will be informed about opportunities to participate in research. You will also receive family meeting announcements, special mailings, and information regarding any discoveries about OCNDS impacting care decisions.

CLICK LINK ↓ TO DOWNLOAD A PDF OF COMMON QUESTIONS TO SHARE WITH YOUR PROVIDERS, TEACHERS, FAMILY, FRIENDS, AND DOCTORS.

YOU FINALLY HAVE A DIAGNOSIS!

HERE ARE STEPS TO TAKE NOW

We know this is an overwhelming time. It is difficult to know where to begin. As you are navigating this new diagnosis, here are steps you can take to get informed, connected and make an impact today!

  1. Stay up to date on the latest OCNDS news by joining our Contact Registry. You will need to know your genetic diagnosis in order to complete registration. Here is a video on how to read your genetic report. If you have difficulty, we can help you.
  2. Connect with other OCNDS families by joining the private Facebook group.
  3. Help researchers & our community better understand OCNDS by registering with Simons Searchlight for the OCNDS long term natural history study.
  4. Help raise awareness, follow us on Facebook & Instagram.
  5. Educate yourself and others and distribute the What is Okur-Chung Neurodevelopmental Syndrome - CSNK2A1 Foundation information page to your family, doctors, friends, teachers, and service providers.
  6. Become informed and watch our conference, informational, research update, and awareness Videos.
  7. Feel less alone and read our Blogs which feature stories about our journey and stories from our OCNDS community.
  8. Visit Faces of OCNDS to see children like yours. If you would like to share your child’s photo for the Faces of OCNDS, please fill out and sign the consent form and submit the form and photos to info@csnk2a1foundation.org
  9. View the Worldwide Cases of OCNDS Map in which you will discover that our syndrome spans the globe.
  10. Check for any upcoming events.
  11. Give hope to others in the OCNDS community by writing about your own OCNDS journey to be featured on our blog called Stories From Our Community. Submit your story to info@csnk2a1foundation.org
  12. Invest in a cure by donating or holding a fundraiser or purchasing CSNK2A1 Foundation merchandise to support meaningful OCNDS research.