Family Resources

Individually, we are one drop.
Together, we are an ocean.

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.

4. Help Raise Awareness

Follow us on Facebook & Instagram.

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 Other

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 storhere.

12. Invest in a Cure

Donate, volunteer, hold a fundraiser or purchase CSNK2A1 Foundation merchandise to support meaningful OCNDS research.

We have a library of
OCNDS videos.

CSNK2A1 Foundation was founded in 2018. We are the only patient-centered organization of its kind focused on finding treatment and a cure for OCNDS.

Connect with other OCNDS families by joining the private Facebook Group.

One of the top concerns for caregivers and parents of a child living with OCNDS is who will care for the child when caregiver or parent dies.

We have stories from our community where caregivers share their experience.

CSNK2A1 is a gene located on Chromosome 20. This gene plays a vital role in development. When there is a change to or a mutation on the CSNK2A1 gene, it can cause Okur-Chung Neurodevelopmental Syndrome (OCNDS).

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.

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