Hope. Community. Collaboration. Understanding. Cure.

NEWLY DIAGNOSED

CSNK2A1 Foundation is focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome and ensuring affected individuals have the opportunities and supports necessary for happy and full lives.

Drive for Diagnosis 2024 Golf Classic

To benefit the CSNK2A1 Foundation & TGEN’s CENTER FOR RARE CHILDHOOD DISORDERS in their collaborative efforts to diagnosis and find a cure for Okur-Chung Neurodevelopmental Syndrome


Monday - April 15, 2024

El Caballero Country Club

Tarzana, California

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THANK YOU TO OUR GOLF CLASSIC TITLE SPONSOR



FAQS

FAQS

What is Okur-Chung Neurodevelopmental Syndrome?

What causes OCNDS? Learn more.

Family Resources

FAMILY RESOURCES

Discover resources to get informed, stay connected, and make an impact. Find out how.

Contact Registry

CONTACT REGISTRY

Stay up-to-date on the latest OCNDS news. Sign up.

Events

EVENTS

Check for any upcoming events.

Donate

DONATE

Invest in a cure. Donate.

Shop

SHOP

Raise awareness with OCNDS gear. Shop.

Okur-Chung Neurodevelopmental Syndrome is a rare genetic disorder first identified in 2016. OCNDS is caused by a mutation in the CSNK2A1 gene which is located on Chromosome 20. The gene CSNK2A1 creates a protein called CK2 which plays a crucial role in development. A mutation in this gene disrupts typical development.


  • Everyone with OCNDS has some degree of developmental delay and/or differences in brain function
  • More than 220 patients worldwide have been diagnosed with OCNDS so far. This number is expected to increase with increasing utilization of WES in other regions of the world
  • OCNDS is caused by heterozygous mutations in the CSNK2A1 gene on chromosome 20
  • OCNDS affects both males and females
  • There is not a definitive cure for OCNDS yet

Printable Brochure

For help in explaining an OCNDS diagnosis to others, print and share this informational brochure.

Booklet is intended to be printed on both sides and folded in half. You may need to set your printer to print double-sided.

BROCHURE

Upcoming Events

2024 Drive for Diagnosis Golf Classic
By Jennifer Sills 11 May, 2023
Save the Date: 2024 Drive for Diagnosis Golf Classic Benefitting all OCNDS research programs Monday - April 15, 2024 El Caballero Country Club Tarzana, California

Our Sponsor

Pinnacle 2023 Golf Fundraiser

Pinnacle Contracting Corporation 2024 Golf Fundraiser #webuildla

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