2025 Connect + Collaborate: OCNDS Scientific & Family Conference

📅 Event Dates

• Family Meeting: Friday–Sunday, July 18–20, 2025
• Scientific Meeting: Thursday–Saturday, July 17–19, 2025

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

🎟 Registration Deadline: Registration closes June 7, 2025

💵 Registration Fees

• Adults: $50 per person
• Children: $25 per person
  We are committed to keeping costs at a minimum for OCNDS families by actively fundraising and seeking grant funding to subsidize conference expenses.
• Who must register: Everyone attending the conference must register, including babies and children. Even if your child is an infant or not attending the sessions, they still need to be registered for childcare and meal planning purposes.
• By registering for the conference, you have acknowledged that you have read and agreed to adhere to the Conference Code of Conduct.  We appreciate your understanding and cooperation in creating a positive and welcoming environment for all.

Event Overview

The 2025 Connect + Collaborate Conference is the premier event for the OCNDS community, uniting caregivers, families, patients, researchers, clinicians, and advocates to advance research, share knowledge, and strengthen connections.

Who Should Attend?

• OCNDS caregivers, patients, family members, and friends
• Medical professionals, researchers, and industry representatives

What to Expect

• Expert-Led Sessions: Learn about the latest advancements in OCNDS research, treatments, and therapies from top global experts.
• Family Connection: Build a support network with other families who share your journey.
• Interactive Panels: Participate in Q&A sessions, panel discussions, and collaborative workshops.
• Youth Programming: Engaging activities and breakout sessions designed for individuals with OCNDS and their siblings.
• Sibling Support Workshops: Guided by Jessica Ruth, these sessions support siblings navigating life with a brother or sister who has OCNDS.
• Crowdsourcing Research Questions: Collaborate with researchers and clinicians to prioritize future OCNDS research initiatives.
• On-Site Research Opportunities: Families can directly engage in research activities to accelerate discoveries.
• Educational Sessions: Topics include autism diagnosis, navigating IEPs, and transitions of care.

Logistics

🏨 Lodging

• The foundation will host 1 room per OCNDS family for 3 nights: July 17, July 18, July 19.
• Requirements:
  • U.S. Families must be enrolled in Citizen Health and Simons Searchlight to qualify.
  • International Families must be enrolled in Simons Searchlight to qualify unless native language is not supported by Simons Searchlight.
  • Families not participating in these research initiatives will be responsible for covering their lodging costs at the discounted block rate we have secured for the event.

🍽 Meals Provided

• Breakfast: Daily, included with your stay.
• Lunch & Dinner: Friday and Saturday.
• Sunday: A boxed lunch will be provided.

Childcare

Complimentary childcare will be available on Friday and Saturday during the family conference sessions.  Please indicate your childcare needs in the post-registration questionnaire.  We have engaged Corporate Kids Events Inc. to oversee our childcare program.  See this Childcare FAQ for details.

Post-Registration Details

Once you register, you will receive a detailed questionnaire to help us better prepare for your participation. This will include questions about childcare needs, allergies, dietary restrictions, special accommodations, t-shirt sizes, travel information, and more.

Why Attend?

This is a unique opportunity to:

• Directly collaborate with world-class researchers and clinicians.
• Share your lived experiences to shape future research priorities.
• Strengthen your support network within the OCNDS community.
• Gain valuable tools and insights to navigate life with OCNDS.

Travel Scholarship

Apply for a Travel Scholarship (if needed).  Scholarship awards may be available to families who qualify. If travel expenses are a barrier to attending the conference, please consider applying for a travel award through our Travel Scholarship Form. Scholarships are awarded based on the number of applications received and the specific needs of each family.  Deadline to apply is April 25, 2025.  

Additional Features

• Keynote Address: Delivered by Effie Parks (Once Upon A Gene) on advocacy and community-building.
• Innovative Accessibility: Sessions will be recorded and translated into multiple languages to ensure inclusivity.
• Comprehensive Documentation: A lay summary and formal publication of the conference will be produced for future reference.
• Community Activity: End the conference with a fun and engaging activity to foster connections and create lasting memories.

💬 Questions?  See FAQ our here.  

Contact us at research@csnk2a1foundation.org.

🌟 Join us in Denver to collaborate, connect, and create a brighter future for the OCNDS community!