CSNK2A1 Foundation Connect + Collaborate 2025 Scientific & Family Conference 

Empowering the OCNDS Community

Our upcoming conference, Connect + Collaborate, is a groundbreaking event designed to foster collaboration among families, researchers, and professionals dedicated to advancing understanding and support for Okur-Chung Neurodevelopmental Syndrome (OCNDS).


Conference Dates: July 17 – July 20, 2025

Location: Embassy Suites by Hilton Denver Central Park, 4444 Havana Street, Denver, CO 80239

Conference Highlights:

  • World-Class Collaboration: This meeting will bring together the top minds in OCNDS research, spanning diverse disease models (fly, frog, zebrafish, mouse, human fibroblasts, iPSCs) and fields (animal behavior, molecular biology, medicinal chemistry, circadian rhythms, drug repurposing, developmental biology). Representatives will span a diverse range of countries, such as France, Germany, and the United States.
  • Keynote Speaker: Effie Parks from Once Upon A Gene will deliver the keynote address, sharing insights on advocacy and community-building.
  • Innovative Accessibility: Sessions will be recorded and translated live into multiple languages, ensuring that language isn’t a barrier for any attendee.
  • On-Site Research Opportunities: Families will have the unique opportunity to engage in research activities, helping drive discoveries forward more rapidly.
  • Crowdsourcing Research Questions: For the first time ever, researchers and families will collaborate to shape the future of OCNDS research.
  • Family-Centered Panels: Caregivers will share their experiences, providing invaluable and foundational insights for researchers.
  • Sibling Support Workshops: Facilitated by Jessica Ruth (Executive Director, Treehouse Tribe, M.A. Special Education, Education Specialist ESN, ASD), these workshops will help siblings navigate life with a brother or sister who has OCNDS.
  • Educational Sessions: Topics include understanding an autism diagnosis, navigating IEPs, and planning transitions of care.
  • Comprehensive Documentation: A Vanderbilt PhD student, Caroline Bodnya, will serve as the conference intern chair, documenting all sessions and producing a lay summary to be distributed via the foundation’s website and email lists. Additionally, a formal publication of the conference summary is planned for a journal such as Translational Science of Rare Diseases.
  • Community Connection: The conference will conclude with a fun community activity, fostering relationships and creating lasting memories.