2026 Run, Walk & Roll

JOIN US!

Join our worldwide Okur-Chung Neurodevelopmental Syndrome (OCNDS) community on OCTOBER 10TH and OCTOBER 11TH for our BOLD BREAKTHROUGHS Run, Walk & Roll for OCNDS! This event will help raise awareness and fund research for OCNDS, an ultra-rare genetic disease that affects individuals worldwide. IF YOU SIGN UP AFTER SEPTEMBER 18, WE CAN'T GUARANTEE YOUR RACE SHIRTS WILL ARRIVE ON TIME.

Register Here

Do I Need to Run to Participate?

Absolutely not! This is called a run, walk, or roll. Our goal is for you to safely come together with others to bring awareness to OCNDS. Invite some friends and family to join you to come together for OCNDS. You can meet at the park, your street corner, the beach, or anywhere - get out of the house and move! You can RUN. You can WALK. You can ROLL.

What is Our Theme for the Year?

Our foundation theme for the year is BOLD BREAKTHROUGHS. The overarching goals of the foundation are to:


  1. Fund Research to Find Treatments/Cure
  2. Support Families
  3. Raise Awareness
  4. Advocate for Change
  5. Fundraise to support our efforts


We can’t do this alone, and we thank you for your commitment to come together to make the lives of those living with OCNDS brighter. Whether you participate as an individual, become a Family Team Captain, or invite others to support your fundraiser, every step helps move OCNDS research forward.

Why RUN, WALK or ROLL? Why Donate?

OCNDS is a lifelong condition that significantly impacts the lives of those affected and their families. We’re raising $50,000 to support research focused on the top priorities identified at our recent conference—where families and researchers came together to chart the future of OCNDS. These include sleep, speech and language, anxiety, intellectual disability, GI health, and drug repurposing. Your support will help turn these priorities into progress.