(415) 483-2488
CSNK2A1 Foundation Logo

Understanding
Okur-Chung Neurodevelopmental Syndrome

a logo for the csnk2al foundation

Understanding
Okur-Chung Neurodevelopmental Syndrome

Learn More About OCNDS – Simons Searchlight Q&A

What is Simons Searchlight

Join us on Sunday, March 14th at 12:00pm EASTERN to speak to Jennifer Tjernagel, the Simons Searchlight Senior Project Manager, about the CSNK2A1/OCNDS research opportunity. This Q and A will be recorded.
Register in advance for this Q and A here .
After registering, you will receive a confirmation email containing information about joining the webinar.
Simons Searchlight is a research project that aims to study rare gene changes that are associated with autism and other neurodevelopmental disorders such as Okur-Chung Neurodevelopmental Syndrome (OCNDS). Currently, 50 OCNDS families have registered with Simons Searchlight. Simons Searchlight collects family, medical, developmental and behavioral information through online surveys and phone interviews with families and individuals. Participants can:
  • Learn about their family member’s diagnosis
  • Partner with some of the best minds in science
  • Get updates on the latest research findings
  • Connect with others who share their diagnosis
  • Contribute to advancements that will change the future for families with these gene changes


“Simons Searchlight is a community of incredibly dedicated researchers and families who work together to improve the lives of those affected by these rare conditions,” says Dr. Wendy Chung , director of clinical research at SFARI, Principal Investigator of Simons Searchlight and SPARK, and the Kennedy Family Professor of Pediatrics in Medicine, Columbia University.

Share by: