SCN8A The Cute Syndrome Foundation

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SCN8A The Cute Syndrome Foundation If you or a loved one has received an SCN8A diagnosis, you are not alone! Send us a message or visit thecutesyndrome.com/join-our-scn8a-community to join.

The Cute Syndrome Foundation raises awareness of SCN8A mutations, funds the dedicated and talented scientists researching SCN8A, and supports the families around the world who are affected by SCN8A-related disorders. The Cute Syndrome is a 501(c)(3) public charity dedicated to funding research for and raising awareness of rare disorders like SCN8A Epilepsy and PCDH19 Epilepsy. Join our international support group to connect with other families, stay up to date on clinical trial and research study information, and find caregiver support resources. This group is open to patients, parents, and direct caregivers of those with SCN8A mutations.

Join us TODAY at 12 PM Eastern!Looking for resources, guidance, and support as you navigate life as a caregiver? This we...
10/13/2026

Join us TODAY at 12 PM Eastern!

Looking for resources, guidance, and support as you navigate life as a caregiver? This webinar is for you! Join TCSF and Blair Young-Whitworth of Courageous Parents Network for an introduction to Courageous Parents Network and NeuroJourney, two valuable resources for families navigating serious childhood illness and neurological conditions.

Drawing on both her professional expertise and personal experience as a parent caregiver, Blair will share tools, resources, and opportunities for connection that can help families feel more informed and supported.

There's still time to register! We hope to see you there.

Register here: https://us02web.zoom.us/meeting/register/DpyUr6eySseR88zSGT-IaA #/registration

Happy Thanksgiving to our Canadian SCN8A families!Today, we're especially grateful for the strength, love, and support t...
10/12/2026

Happy Thanksgiving to our Canadian SCN8A families!

Today, we're especially grateful for the strength, love, and support that make our community so special. Wishing all of the families in Canada a wonderful Thanksgiving filled with moments of joy and connection!

Join us TODAY for our Research & Resources Roundtable, featuring Dr. Sunanjay Bajaj discussing a new study focused on th...
10/07/2026

Join us TODAY for our Research & Resources Roundtable, featuring Dr. Sunanjay Bajaj discussing a new study focused on the non-seizure symptoms that can have a major impact on daily life, including movement, behavior, and communication.

Dr. Bajaj will share what researchers hope to learn, why understanding the full SCN8A experience matters, and how families can help move this research forward. Even better, families can participate in the study virtually, making it accessible no matter where you live.

If movement, behavior, communication, or other non-seizure challenges are part of your family's SCN8A experience, we hope you'll join us to learn more.

TODAY, October 7 at 3:00 PM ET

Register here: https://us02web.zoom.us/meeting/register/D-1AoRLlSmCv_q3tNvSCAA

In March, the SCN8A community had an important opportunity to make our voices heard by the FDA.During our Patient-Led Li...
10/06/2026

In March, the SCN8A community had an important opportunity to make our voices heard by the FDA.

During our Patient-Led Listening Session, patients, caregivers, clinicians, and advocates shared the real-life impact of SCN8A-related disorders, including challenges that extend far beyond seizures.

Together, we emphasized three key messages: current treatments are not enough, meaningful progress looks different for every person, and the need for better treatment options is urgent.

Families shared their experiences with treatment, development, side effects, loss, uncertainty, and hope, while advocating for treatments and clinical trials that better reflect what meaningful change looks like for people living with SCN8A.

The official session notes and family story videos are now available on our website.

💜 We invite you to read, watch, and learn more about what our community shared with the FDA here: thecutesyndrome.com/fda-patient-listening-session

Day 1 is here!The 2026 TCSF Virtual Run, Roll & Stroll is officially underway! It’s time to get moving, wear your race s...
10/01/2026

Day 1 is here!

The 2026 TCSF Virtual Run, Roll & Stroll is officially underway! It’s time to get moving, wear your race shirt or purple, and help us raise awareness for SCN8A throughout the month of October.

As you participate, snap a photo and tag so we can follow along and share our community in action.

Haven’t registered yet? It’s not too late! Join us at runsignup.com/tcsfrace.

Our new website is LIVE! We’ve given thecutesyndrome.com a fresh new look and made it easier to find resources, stay con...
09/30/2026

Our new website is LIVE! We’ve given thecutesyndrome.com a fresh new look and made it easier to find resources, stay connected, and keep up with what’s happening in the SCN8A community.

-Stay in the loop: Our new interactive calendar brings upcoming webinars, family programs, events, and important dates together in one place. You can even subscribe to add them right to your own calendar!

- Explore our new video library: Search and filter through hundreds of videos, including webinars, educational presentations, past Annual Gatherings, and more.

- Find what you need: We’ve updated and reorganized information and resources throughout the site to make them easier to find and use.

Head over to the new website, take a look around, and let us know what you think!

We have an exciting October ahead with plenty of opportunities to connect, learn, and grow alongside the SCN8A community...
09/28/2026

We have an exciting October ahead with plenty of opportunities to connect, learn, and grow alongside the SCN8A community.
Join us for our fall webinars, "Research & Resources Roundtable," as well as our monthly family programs, including Bereavement Support, Virtual Coffee & Chit Chat, Community Power Hour, and Book Club.

🔗 Register at thecutesyndrome.com/familyevents

We hope to see you there!

Thank you to our Research and Resources Roundtable Series and Social and Emotional Support Programming sponsors Biosciences and Praxis Precision Medicines .

Wishing all our SCN8A warriors an amazing 2026-2027 school year!"Weston, and Ripley, are starting grade 9 this year."
09/28/2026

Wishing all our SCN8A warriors an amazing 2026-2027 school year!

"Weston, and Ripley, are starting grade 9 this year."

Today is International Ataxia Awareness Day.Ataxia is a neurological disorder that affects balance, coordination, and co...
09/25/2026

Today is International Ataxia Awareness Day.

Ataxia is a neurological disorder that affects balance, coordination, and control of movement. It can make many daily activities more difficult. For some people with SCN8A-related disorders, ataxia can be part of their experience. It may appear as an unsteady walk, poor balance, difficulty with fine motor skills, or trouble coordinating movements. Like many symptoms associated with SCN8A, ataxia can look different from person to person and vary in severity.

Today, we recognize the members of our SCN8A community who experience ataxia and as well as the families who support them.

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Ozark, MO

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