Understanding
Okur-Chung Neurodevelopmental Syndrome
CSNK2A1 Foundation Conference Sponsorship Opportunities
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). Your sponsorship will directly contribute to making this event accessible, impactful, and memorable for all participants.
Conference Dates: July 17 – July 20, 2025
Location: Denver, Colorado
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.
Sponsorship Levels:
Your contribution ensures families and researchers can attend this life-changing event while helping cover essential conference costs. By partnering with us, you will also demonstrate your leadership in advancing research and improving lives within the OCNDS community.
List of Services
Presenting Sponsor — $50,000
Play a vital role in making the event accessible and impactful for all participants. As the exclusive Presenting Sponsor, you will play an essential role in shaping the future of OCNDS research and support.
- Prime logo placement on all event signage, marketing materials, and conference webpage
- Exclusive speaking opportunity during the opening session
- Featured story and social media campaign highlighting your leadership in rare disease advocacy
- Prominent acknowledgment in the conference program and press releases
Room Sponsor — $20,000
Fund accommodations for every single researcher attending the conference, ensuring they have a comfortable, focused environment to share their latest findings and accelerate scientific progress.
- Logo recognition in all researcher-focused materials and activities
- Acknowledgment on the conference website and in promotional emails
- Dedicated social media spotlight to celebrate your support
- Recognition in the conference program and signage in the researcher areas
Family Sponsor — $15,000
Help ease the financial burden for OCNDS families traveling from around the world by covering their accommodations for the entire conference. Your support ensures these families can focus on connecting, learning, and finding hope without the worry of additional costs.
- Recognized in all family-centric activities and materials
- Acknowledgment in the conference program and website
- Social media recognition for your generous contribution to family accessibility
- Your logo on travel-related conference materials
Childcare Sponsor — $12,500
Provide peace of mind for parents by supporting a safe, fun childcare program, allowing them to fully engage in this life-changing conference while their children enjoy meaningful activities.
- Stand out with your logo on the conference website and materials
- Dedicated social media acknowledgment
- Recognition in the conference program
- Opportunity to participate in dinner and networking sessions
Travel Scholarship Sponsor — $10,000
Provide critical travel support for families, ensuring that transportation issues do not prevent participation.
- Featured acknowledgment during travel assistance communications
- Recognition in the conference program and social media platforms
Gold Sponsor — $7,500
Host a dinner where researchers and families can come together, share ideas, and help foster a stronger sense of community.
- Stand out with your logo on the conference website and materials
- Dedicated social media acknowledgment
- Recognition in the conference program
- Opportunity to participate in dinner and networking sessions
Silver Sponsor — $5,000
Break language barriers by funding translations of all recorded sessions into 25 languages. This will increase conference accessibility to an even wider global audience.
- Acknowledgment in the conference program and on social media
- Your logo featured during translated session screenings
Bronze Sponsor — $2,500
Provide support to collect biological samples (e.g., blood, nasal swabs) for research studies from 2 families on-site at the conference, directly advancing essential research.
- Recognition in the conference program
- Opportunity to meet with research teams
Community Activity Sponsor — $1,000
Host the closing community activity on Sunday, where researchers and families convene one last time to create lasting memories for the future.
- Be acknowledged as a valued supporter on the conference website
- Recognition during the community event and in the conference program
Research Poster Sponsor — $500
Support the creation and presentation of research posters at the conference, showcasing the latest in OCNDS research.
- Recognition on research poster display and in the conference program.
- Your logo on the poster display area where attendees can engage with researchers.
Friend of the Foundation — $250
Provide a family with access to educational materials and resources from the conference, helping them continue their journey in understanding OCNDS.
- Your name listed in the conference program as a Friend of the Foundation
- Acknowledgment on the conference website
Create Lasting Impact:
Join us in transforming the lives of families and advancing OCNDS research. Your support will leave a lasting legacy for the global OCNDS community, fostering greater access, innovation, and collaboration.
For sponsorship inquiries, please contact:
Jennifer Sills
Founder & President, CSNK2A1 Foundation
jennifer@csnk2a1foundation.org
(415) 265-2575