TCSF 3rd Annual VIRTUAL Run, Roll, and Stroll

Join us for TCSF 3rd Annual Virtual Run, Roll, and Stroll.

Participants around the world are invited to walk, run, roll, or stroll either 5 kilometers (3.1 miles) or 1 mile in honor of the SCN8A community. Since this is a Virtual Race, you can participate any time, anywhere, between October 3rd and 14th, 2025. All proceeds from this event will benefit The Cute Syndrome Foundation (TCSF), a nonprofit with a mission to raise SCN8A awareness, advance SCN8A research and support the patients and families around the world who are affected by SCN8A-related disorders.

• $10.00 USD registration includes donation to TCSF, entry, and printable race bib
• Performance Long Sleeve Shirts can be purchased separately. Proceeds from shirt sales will benefit TCSF.

Why a Virtual Race?
SCN8A is a rare disorder, so our patient community is spread out all over the world! Our Annual Run, Roll, and Stroll allows the international SCN8A community - patients, families, friends, providers, researchers, partners, and local communities - to join together in shared activity. The virtual format allows you to choose a date and time between October 3rd and October 14th that is convenient to you, and participate in your neighborhood, your favorite park or trail, inside on a treadmill, and alone or with friends! International participants are welcome!

What’s included? 
Your $10 registration is a direct donation to TCSF, and includes a printable race bib and opportunity to compete for TCSF swag in the fastest competitor, biggest fundraiser, and most spirited photo categories. Participants will self report their 5K and 1 mile time on the RunSignUp website. Performance t-shirts are available for sale seperately.

How can I add to the fun? 

• Race with friends! During our inaugural event, many participants met up with friends and family to walk, run, and roll together!
• Get creative! Dress up in purple and fun accessories and snap a pic to enter our most spirited photo contest!
• Grow your support!  We also encourage participants to set up a team and register friends and family or fundraise for The Cute Syndrome Foundation.
• TCSF Swag prize packs will be awarded to the fastest participant, the biggest individual fundraiser, and the most spirited photo.
   

How can I further support The Cute Syndrome Foundation?

Become a fundraiser and join or create a team!

Step by step instructions are available here: How to create and customize a team.

If you'd like to help us reach our fundraising goals, you can choose to become a fundraiser. During race registration, you'll have the opportunity to set up a team member profile and join a team. Teams can be created in honor of your SCN8A loved one, family, business, or other community organization! After completing your registration, you can edit and customize your personal or team page by logging in to your RunSignUp account.

Fundraise by sharing your team link with friends and family and asking them to join or make a donation!   

What is SCN8A?

SCN8A is a gene that encodes a voltage-gated sodium channel and affects how brain cells function. TCSF supports patients who are impacted by variants in the SCN8A gene. Every individual is affected diferently, but some commonly reported challenges include difficult to control epilepsy, learning difficulties, movement disorders or coordination challenges, language difficulties, developmental delay, feeding and GI disorders, respiratory challenges, and autism spectrum disorder. Patients are typically diagnosed with SCN8A during infancy or childhood, and may be affected throughout their entire life. There is currently no cure for SCN8A-related disorders.

Why Support The Cute Syndrome Foundation?

TCSF aims to be a supportive resource for families who are impacted by an SCN8A mutation and a trusted collaborator with clinicians, industry, and researchers. Since our founding in 2013, thanks to support from donors, volunteers, and the SCN8A community, we have:

• Connected with 525 families in 53 countries
• Funded or co-fund over $500,000 in research grants
• Empowered SCN8A families through annual virtual education series
• Awarded over $55,000 to SCN8A patients through the Connor James Smith Patient Assistance Grant, which funds medications, therapies, and equipment not covered by insurance
• Increased SCN8A awareness each year on International SCN8A Awareness Day - this year’s Awareness Day video received over 90,000 views!
• Provided support to caregivers through our private Facebook support group, Grief Recovery Program, and Pathway to Peace Life Coaching
• Hosted 10 Annual Clinician, Researcher, and Family Gatherings
• Provided over $71,000 in Dr. Mandy Harris Travel Grants to reduce the cost burden for SCN8A families attending the Annual Gathering in person
• Advocated on behalf of SCN8A patients at conferences and events
• Built community and facilitated fun through Cute Connections in-person regional meet ups
• Honored the memory of SCN8A angels and offered support to bereaved caregivers