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.

2025 Theme

 The 2025 International SCN8A Awareness theme is two simple, short, yet powerful words – “I Am.” No two SCN8A journeys are alike, so we encourage you to fill in the blank and share your unique story with the world. We invite SCN8A warriors to celebrate what makes you special, express the challenges you face, and connect the dots in between.
  • Celebrate Individuality and Strength:
    Highlight the unique stories, abilities, and milestones of SCN8A warriors. Families are encouraged to create personalized "I Am" statements that reflect their loved one’s personality, achievements, and journey such as "I Am Resilient", "I Am Joyful", or "I Am a Fighter".
  • Raise Awareness and Foster Understanding:
    Share the challenges faced by those living with SCN8A to build empathy and awareness. Use the "I Am" theme to express emotions, highlight resilience, and educate others about the complexities of the condition. (Ex: "I Am Brave", "I Am Hopeful").
  • Connect and Build Community:
    Inspire families and individuals to connect with others in the SCN8A community through social media. Highlight how shared experiences create bonds between families, caregivers, and advocates. Showcase stories of teamwork and collaboration, such as partnerships with healthcare providers, researchers, or support groups. "I Am SCN8A".
  • Spotlight Resilience and Hope:
    Highlight stories of resilience by showcasing moments when SCN8A warriors overcame challenges or achieved milestones. Use "I Am" to convey messages of hope and strength, like "I Am Strong" or "I Am Grateful". Celebrate milestones and inspire others with testimonials of overcoming challenges and adapting through the SCN8A journey.

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

Contact Megan Varner with any questions about using these materials.
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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

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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
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Press Release

2024 Awareness Day Map

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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