Information
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.
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 whether on a bike, wheelchair, walker, scooter, roller skates, or rollerblades.
What is our theme for the year? Our foundation theme for the year is BOLD BREAKTHROUGHS. The overarching goals of the foundation are to:
- Fund Research to Find Treatments/Cure
- Support Families
- Raise Awareness
- Advocate for Change
- 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. Please send us photos of you with your family & friends moving toward BOLD BREAKTHROUGHS to bring awareness to OCNDS.
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.
HOW TO SIGN UP:
Step 1. Register to run/walk/roll the virtual 5k or 1 mile, and invite your family and friends to join! Give your t-shirt size and mailing address. IF YOU SIGN UP AFTER SEPTEMBER 18, WE CAN'T GUARANTEE YOUR RACE SHIRTS WILL ARRIVE ON TIME.
Step 2. Invite your friends and family to join you and register.
Awards to be given for: *Loudest Family/Individual on Social Media, *Top Fundraiser, and *Most Creative Forward Together Photo on Facebook/Instagram
PRICING: $30 per adult registrant, $18 per child (2-18) registrant
- Registration fee covers the cost of the t-shirt and does not go toward fundraising
- Those who wish to participate should register first (as either an individual or team captain)
- Donations to another individual or team page do not count toward your registration and t-shirt cost
Contact Us
If you have any questions about this race, click the button below.
No. T-shirts are included with race registration only and are not included with donations.
Absolutely! You can register and select "No Shirt," or make a donation without registering.
Yes! Email Beth at beth@csnk2a1foundation.org with the size and quantity you need. Please include your mailing address.
You can still participate, but t-shirts are only guaranteed for registrations made by September 18th. After that date, shirts may arrive late.
T-shirts are typically delivered within two weeks.
Not at all! This is a run, walk, or roll — whatever works for you. Our goal is to come together, move, and bring awareness to OCNDS. Grab some friends or family and meet at a park, your street, the beach, or anywhere you like. Run. Walk. Roll. All are welcome!
Yes! This is a virtual event, so you can participate wherever you are in the world.
Yes, but please note that participants who complete after October 11th may not be eligible for awards.
Yes!
No.
No. Fundraising is encouraged but never required.
Yes, you can make a donation at any time without registering for the event.
Yes! The CSNK2A1 Foundation is a registered 501(c)(3) nonprofit organization.
During registration, you will have the option to create a new team. To create a team after registration:
- Log into RunSignUp.
- Go to Profile > Upcoming Events > Manage Registration.
- Select Groups/Teams > Create New Group/Team.
Yes! To join a team after registration:
- Log into RunSignUp.
- Go to Profile > Upcoming Events > Manage Registration.
- Select Groups/Teams > Join Existing Group/Team.
Yes! This is a virtual event, so everyone can participate from wherever they live.
You will receive a confirmation email from RunSignUp shortly after registering.
Please email Beth at beth@csnk2a1foundation.org as soon as possible.
Email Beth at beth@csnk2a1foundation.org
