RESOURCES

August 17-19, 2018, 17 families affected by OCNDS came together in New Jersey for our first family conference. Dr. Chung, Dr. Okur, Dr. Rebholz and Emily Glogowski presented the most up to date information about OCNDS.

Please watch the videos below to learn more. We encourage you to share them with your providers, teachers, family, friends and doctors.

 

Dr. Wendy Chung


 

Dr. Volkan Okur - Presenting Discovery of the Disease


 

Heike Rebholz, PhD - Presenting Casein Kinase (CK2) - Jack of All Trades


 

Emily Glogowski, MS. MCs, LCGC - Genetics 101 - Gene DX


 

Make an impact. 

Are you newly diagnosed, or a parent or caregiver to someone with OCNDS?  You can make an impact on the OCNDS community by taking the following actions:

  1. Connect with other OCNDS families by joining the closed Facebook group.
  2. Stay up to date on the latest OCNDS news by joining our Contact Registry.
  3. Help researchers better understand OCNDS by registering with SIMONS VIP for the OCNDS long term natural history study.
  4. Help raise awareness, follow us on our Facebook page and distribute the What is Okur-Chung Neurodevelopmental Syndrome - CSNK2A1 Foundation information page to your family, doctors, friends, teachers, and service providers.
  5. Invest in a cure by donating or holding a fundraiser to support meaningful OCNDS research.
  6. Give hope to others in the OCNDS community by sharing the story of your own OCNDS journey.

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

What is Okur-Chung Neurodevelopmental Syndrome


 

Genetics