What is International SCN8A Awareness Day?

International SCN8A Awareness Day is an awareness-raising campaign for SCN8A-related disorders, observed annually on the 9th of February. The primary goal of this campaign is to increase awareness among the general public about SCN8A and emphasize the importance of support for affected families.

International SCN8A Awareness Day was launched by SCN8A family organizations Ajude o Rafa, The Cute Syndrome Foundation, and Wishes for Elliott in 2017.

Learn more about the first SCN8A Awareness Day.

Key Messages

  • Understanding SCN8A is Crucial for Early Diagnosis and Effective Management: By educating healthcare professionals and the public, the chances of recognizing early signs and providing timely testing and interventions are greatly improved, leading to better patient outcomes.
  • Stories of Individuals and Families Living with SCN8A: These narratives can provide a human face to the disorder, fostering empathy and understanding. They can also serve as a source of support and inspiration to others in similar situations, creating a sense of community among those impacted by SCN8A.
  • Advances in Medical Research and Treatment Options: Our knowledge and understanding of SCN8A-related disorders has increased exponentially in the last decade, due primarily to the advocacy of SCN8A parents and caregivers. This advocacy has fostered collaborations between researchers, healthcare providers, and pharmaceutical companies. The involvement of those directly impacted by SCN8A ensures that the research remains patient-centered and relevant to the real-world needs of those affected.​

How to support International SCN8A Awareness Day

  1. Show your support for the SCN8A community by sharing a photo of you wearing an International SCN8A Awareness Day shirt on social media. Use the hashtag #scn8aawarenessday and tag @thecutesyndrome.
  2. Follow and share posts from @thecutesyndrome throughout the month of February—especially our awareness day video on February 9th!
  3. Utilize the campaign materials below on social media and within your community to help amplify our message.
  4. Tell your story. Raise awareness by sharing your personal experience with SCN8A or it’s impact on someone you love.
  5. Get your community involved. Share our awareness materials at your child’s school or reach out to local media about doing a story for awareness day.

2026 Theme

Unstoppable celebrates the strength and resilience of the SCN8A community and honors the enduring legacy of those we have lost to SCN8A. It recognizes the determination of our warriors, the unwavering love of caregivers, and the relentless commitment of researchers, clinicians, and advocates who refuse to stop pushing forward. Together, we are Unstoppable. Here are some ways you can use this theme to tell your story:

  • Celebrate Strength and Resilience:
    Highlight the courage, perseverance, and determination shown every day by SCN8A warriors and their families. Share stories of grit in the face of seizures, hospital stays, therapies, and unknowns. Unstoppable means continuing to fight, advocate, and love fiercely, no matter the obstacles.
  • Honor Legacy and Remembrance:
    Unstoppable also honors the beautiful lives of those we have lost to SCN8A. Their impact continues to shape research, advocacy, and community connection. Families are encouraged to share stories, photos, and memories that reflect how their loved one’s light and legacy remain Unstoppable in driving progress and hope.
  • Advance Awareness and Advocacy:
    Use the Unstoppable theme to spotlight the urgent need for research, improved treatments, and broader public understanding. Share facts, personal experiences, and calls to action that demonstrate how this community continues to move forward with purpose and determination. Our advocacy is Unstoppable.
  • Strengthen Community and Collective Impact:
    Showcase the power of connection within the SCN8A community. From family support networks to partnerships with healthcare providers and researchers, highlight how collaboration fuels progress. When we stand together—families, clinicians, scientists, and supporters—we are truly Unstoppable.
  • Inspire Hope for the Future:
    ​Share milestones, breakthroughs, and moments of joy that reflect forward momentum. Whether it’s a therapy milestone or a day filled with laughter, these moments remind us that hope is stronger than fear. The SCN8A community continues to move forward with courage, love, and resolve. We are Unstoppable in the pursuit of better treatments and brighter tomorrows.

Social Media Graphics
Download these images to share on social media!

Contact Megan Varner with any questions about using these materials.
awareness_day_logo.png
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Add a photo of your SCN8A warrior and their name to this template, then post on social media to show your support!

Facebook Cover Photos

scn8a_awareness_day-fb_cover.png
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awareness_day-fb_cover 2.png
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Zoom Background

How to use:
  1. Sign into Zoom
  2. Click your profile picture, then click "Settings"
  3. Select "Backgrounds & Filters"
  4. Click the + icon and select the photo from your computer to upload it
scn8a_awareness_day_zoom_background_1.png
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Facebook Profile Photos

Facebook no longer supports profile frames, however we have created Canva templates that you can add your own photo to and upload to Facebook. Canva accounts are free to create. To make your profile photo:
  1. Open the template
  2. Click "uploads" on the left and upload your photo
  3. Drag it on top of the landscape image in the Awareness Day frame you want to use
  4. Click "share", then "download"
  5. Select the page number of the frame you used
  6. Click "download"
  7. Upload your new profile photo to Facebook!
​*Works best on a computer
Thank you to our 2024 SCN8A Awareness Day sponsor:
Website maintained by The Cute Syndrome Foundation