Events
BOLD BREAKTHROUGHS Move Your Way Challenge
Place
Description
JOIN US THIS OCTOBER!
Bold Breakthroughs Month | October 1–31, 2026
Join our global Okur-Chung Neurodevelopmental Syndrome (OCNDS) community as we come together throughout the month of October to raise awareness and fund research that brings us closer to better treatments.
Our Community Celebration Weekend is October 10–11, 2026, when families and supporters around the world will share their photos, stories, and activities online. Can't participate that weekend? No problem! Complete your challenge anytime during October and celebrate with us.
Register by September 18, 2026, to help ensure your event T-shirt arrives before Celebration Weekend.
LAST YEAR, YOU MADE A BREAKTHROUGH POSSIBLE
Because of our incredible community, last year's Bold Breakthroughs campaign raised enough to fund a $50,000 pilot research grant. This year, we're working together to fund the next one.
This year, our goal is to raise another $50,000 to fund the next breakthrough in OCNDS research.
Every registration, every donation, and every shared story helps move us forward.
DO I HAVE TO RUN?
Absolutely not!
Bold Breakthroughs is about moving your way—not running a race.
Choose an activity that fits your abilities, interests, and schedule.
You can:
- Run
- Walk
- Roll (wheelchair, walker, scooter, stroller)
- Ride a bike
- Roller skate or rollerblade
- Swim
- Hike
- Dance
- Play golf
- Walk your dog
- Do 100 push-ups
- Create your own challenge
- Whether you move for five minutes or five miles, every step helps advance OCNDS research.
THIS YEAR'S THEME: BOLD BREAKTHROUGHS
WHY PARTICIPATE? WHY DONATE?
OCNDS is a lifelong neurodevelopmental condition that significantly impacts the lives of affected individuals and their families.
This year, we're raising $50,000 to support research focused on the priorities identified by families and researchers during our recent scientific convening, including:
- Sleep
- Speech and language
- Anxiety
- Intellectual disability
- Gastrointestinal health
- Drug repurposing
- Gene therapy feasibility studies
Your support helps turn these priorities into meaningful scientific progress.
HOW TO PARTICIPATE
Step 1
Register as an individual or create a team. Be sure to enter your T-shirt size and mailing address. (don't want a shirt, no problem, see below)
*Register by September 18 to help ensure your T-shirt arrives before Community Celebration Weekend.
Step 2
Choose your own challenge and complete it anytime during October.
Step 3
Invite your friends, family, coworkers, and neighbors to join your team or support your fundraiser.
Step 4
Share your photos and videos during Community Celebration Weekend (October 10–11) or anytime throughout October to inspire others around the world.
COMMUNITY AWARDS
🏆 Top Fundraiser
📱 Loudest Family or Team on Social Media
📸 Most Creative Bold Breakthroughs Photo
REGISTRATION INFORMATION
- Adults: $30
- Children (ages 2–18): $18
Each registration includes:
- One commemorative Bold Breakthroughs event T-shirt*
- One digital race bib
*Register by September 18 to help ensure your shirt arrives before Community Celebration Weekend.
Don't need another T-shirt? During registration, you can select "No T-shirt." The value of your shirt will stay with the Foundation to support OCNDS research.
Race Contact Info
If you have any questions about this race, click the button below.
Swag
Each registration fee includes (1) BOLD BREAKTHROUGHS Event t-shirt and (1) digital race bib. For example, if you register (2) adults and (2) kids, you will receive (4) t-shirts and (4) digital race bibs. Due to shipping challenges, we can only guarantee T-shirts for those who register BEFORE SEPTEMBER 18, 2026.
FAQs
Do I get a t-shirt if I only make a donation?
No. T-shirts are included with race registration only and are not included with donations.
I do not want a t-shirt. Can I still participate or donate?
Absolutely! You can register and select "No Shirt," or make a donation without registering.
Can I purchase an extra t-shirt?
Yes! Email Beth at beth@csnk2a1foundation.org with the size and quantity you need. Please include your mailing address.
What if I register after the t-shirt deadline?
You can still participate, but t-shirts are only guaranteed for registrations made by September 18th. After that date, shirts may arrive late.
When will I receive my t-shirt?
T-shirts are typically delivered within two weeks.
Do I have to run?
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!
Can I participate from anywhere?
Yes! This is a virtual event, so you can participate wherever you are in the world.
Can I complete my walk, run, or roll on a different day?
Yes, but please note that participants who complete after October 11th may not be eligible for awards.
Can I use a treadmill or indoor track?
Yes!
Do I submit my time?
No.
Do I have to raise money to participate?
No. Fundraising is encouraged but never required.
Where does my donation go?
This year, we're raising $50,000 to support research focused on the priorities identified by families and researchers during our recent scientific convening, including:
- Sleep
- Speech and language
- Anxiety
- Intellectual disability
- Gastrointestinal health
- Drug repurposing
- Gene therapy feasibility studies
Can I donate without registering?
Yes, you can make a donation at any time without registering for the event.
Is my donation tax-deductible?
Yes! The CSNK2A1 Foundation is a registered 501(c)(3) nonprofit organization.
How do I create a team?
During registration, you will be given the option to create a new team. To create a team after registration, follow these steps:
Log into RunSignUp using the account you registered with.
Go to your Profile and select Upcoming Events > Manage Registration.
Click on the Groups/Teams menu and select Create New Group/Team.
Can I join a team after I have already registered?
Yes! To join a team after registration, follow these steps:
Log into RunSignUp using the account you registered with.
Go to your Profile and select Upcoming Events > Manage Registration.
Click on the Groups/Teams menu and select Join Existing Group/Team.
Can friends and family in different states or countries join my team?
Yes! This is a virtual event, so everyone can participate from wherever they live.
How do I know my registration was successful?
You will receive a confirmation email from RunSignUp shortly after registering.
What if I need to update my shirt size or mailing address?
Please email Beth at beth@csnk2a1foundation.org as soon as possible.
Who do I contact if I have questions?
Email Beth at beth@csnk2a1foundation.org
Like this page and invite your friends on Facebook.
Race Participant Survey
Please complete the following survey to help us better understand your race experience.
