Event Description

Join us for The Cute Syndrome Foundation’s 2nd Annual All-Abilities Virtual 5K and 1 Mile Fun Race! Participants around the world are invited to walk, run, roll, or stroll 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 5th and 14th, 2024. All proceeds from this event will benefit The Cute Syndrome Foundation, a nonprofit with a mission to raise SCN8A awareness, fund the dedicated and talented scientists researching SCN8A, and support the patients and families around the world who are affected by SCN8A-related disorders.

• $10.00 USD registration includes donation to The Cute Syndrome Foundation, entry, and printable race bib
• Performance Long Sleeve Shirts can be purchased during registration for $33.00 USD for US participants,  $43.00 USD for International Participants, Including shipping

Why a Virtual Race? SCN8A is a rare disorder, so our patient community is spread out all over the world! Our Virtual All-Abilities Race 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 5th 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! Racers are invited to walk, run, or use a wheelchair or stroller. International participants are welcome!

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

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. If you raise $150 or more, your $10 registration fee will be refunded!
• 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!

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 an individual fundraiser profile through RunSignUp.com. You can also join an existing team or create a team of your own! Upon completing your registration, you can customize your personal fundraising page (or team page if you've created one) by logging in to your RunSignUp account. Fundraise by sharing your personal fundraising link or team link with friends and family and asking them to register or make a donation!  If you raise over $150, your $10 race registration fee will automatically be refunded to your original method of payment upon meeting the $150 threshold. For step by step instructions, click here, or email fundraising@thecutesyndrome.com with questions.

What is SCN8A? SCN8A is a gene that encodes a voltage-gated sodium channel and affects how brain cells function. The Cute Syndrome Foundation supports patients who are impacted by rare mutations in the SCN8A gene. Many individuals with SCN8A mutations have epilepsy that is resistant to treatment - they may have seizures every day and need to be hospitalized often. Some may experience learning difficulties, movement disorders, language difficulties, muscle spasms, low or high muscle tone, poor coordination, developmental delay, 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 standard treatment for SCN8A.

Why Support The Cute Syndrome Foundation? The Cute Syndrome Foundation aims to be a 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 nine 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 offer support to bereaved caregivers