Understanding
Okur-Chung Neurodevelopmental Syndrome
Newly Diagnosed
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
Get 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
Connect with other OCNDS families by joining the private Facebook group.
3. Help Researchers
Help researchers & our community better understand OCNDS by registering with Simons Searchlight for the OCNDS long term natural history study and signing up for Citizen Health.
5. Educate Yourself and Others
Distribute the Brochure and What is Okur-Chung Neurodevelopmental Syndrome - CSNK2A1 Foundation information page to your family, doctors, friends, teachers, and service providers.
6. Become Informed
Watch our conference, informational, research update, and awareness Videos.
7. Feel Less Alone
FEEL LESS ALONE Read our Blogs which feature stories about our journey and stories from our OCNDS community.
8. Visit
Visit OCNDS community and see 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 the consent form and upload your photo here.
9. View
Review the Worldwide Cases of OCNDS Map in which you will discover that our syndrome spans the globe.
10. Check
Check our upcoming events page.
11. Give Hope to Others
Help 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 here.
12. Invest in a Cure
Donate, volunteer, hold a fundraiser or purchase CSNK2A1 Foundation merchandise to support meaningful OCNDS research.
Welcome! We found each other. FINALLY!
Some of us have waited years for a diagnosis – a name to describe the condition that has affected our children, a name of a disorder that has silenced many of our children’s voices.
OKUR-CHUNG NEURODEVELOPMENTAL SYNDROME (OCNDS)
Now, finally, we can build our community. We are no longer alone searching in the late hours of the night, typing into a web search different symptoms that affect our children to find something, anything to give a name to what they are experiencing. We are no longer alone. We have each other. Our children are no longer alone. They have other children waiting to meet them that are just like them. We will be each other’s best teachers and best listeners.
We have come together to build this community to support our families and bring funding to new research. We welcome your stories and suggestions to create the kind of support community that will serve a wide range of families throughout the world.