International SCN8A Alliance

International SCN8A Alliance We work with families to advance the understanding of SCN8A and fight for improved treatments & care.

Welcome to the International SCN8A Alliance page, where we share the stories and experiences of families affected by SCN8A—a rare and challenging form of epilepsy. Our mission is to advance research, provide vital resources, and build a supportive community for SCN8A families worldwide. Through our collaborative project, DEE-P Connections (www.DEEPConnections.net), we offer essential information and support for those navigating the complex landscape of severe epilepsies.

A spotlight on progress in the SCN8A community.Congratulations to Gabi Conecker, whose work has been recognized by Wiley...
05/22/2026

A spotlight on progress in the SCN8A community.

Congratulations to Gabi Conecker, whose work has been recognized by Wiley as a 2025 Top Viewed Article in Epilepsia, a leading medical journal focused on epilepsy research.

The SCN8A Consensus on Diagnosis and Treatment article is an important milestone for families, clinicians, and researchers working to improve care for people living with SCN8A-related disorders.

This work brought together global expertise from clinicians, researchers, and caregivers to help build clearer guidance for diagnosing, understanding, and treating SCN8A-related disorders.

For families, this matters.

It means more clinicians can find and use information that helps them recognize SCN8A, understand its complexity, and support families with more informed care. It also reflects something we believe deeply at the International SCN8A Alliance: caregiver experience belongs in the research process.

We are proud of Gabi’s leadership and grateful to everyone who contributed to this important work.

Read the Consensus on SCN8A Diagnosis and Treatment here: https://scn8aalliance.org/scn8a-care/

It is absolutely devastating to share the passing of beautiful Levi, who lived bravely with SCN8A for 11 years. He lit u...
05/21/2026

It is absolutely devastating to share the passing of beautiful Levi, who lived bravely with SCN8A for 11 years. He lit up the room with his infectious smile. He is gone far too soon but we will always continue to fight for more answers in your honor, sweet Levi!

With heavy hearts, we share the passing of beautiful 6 year old warrior Amelia from complications associated with SCN8A....
05/21/2026

With heavy hearts, we share the passing of beautiful 6 year old warrior Amelia from complications associated with SCN8A. She fought bravely and brought so much joy in her far too short time with her family and community. Please join us in sending love to her family during this unimaginable time of loss.
We will always continue to fight for answers in your honor, sweet Amelia.

What started as “he has a virus and aspirated” quickly became “these are seizures” and “we’re life-flighting immediately...
05/20/2026

What started as “he has a virus and aspirated” quickly became “these are seizures” and “we’re life-flighting immediately.”

“In a matter of moments,” Heather says, “our world completely changed.”

Today, Heather describes life with SCN8A as “living in a constant balance between gratitude and uncertainty,” celebrating progress while “carrying the weight of never fully relaxing.”

But Denver is so much more than his diagnosis.

“Denver is a bright, busy, joyful little boy who fills our home with energy and love.” He is “curious, loving, stubborn in the best way, and full of personality.”

Heather says the little moments matter deeply: “hearing him laugh, watching him explore the world around him, or seeing the way his face lights up when he feels safe and happy.”

Right now, his family is celebrating two huge wins: Denver is “starting to get the confidence to walk,” and they are “one month seizure free.”

“With SCN8A,” Heather says, “even a stretch of stability like this feels precious.”

Heather wants other families to know: “you are not alone.”

Help us celebrate Denver’s progress and raise awareness for families living with SCN8A.

Your story matters, too. Share your SCN8A Caregiver Story today: https://bit.ly/scn8a_stories

Every SCN8A family has a story that needs to be heard.We’re collecting caregiver stories to help raise awareness, build ...
05/15/2026

Every SCN8A family has a story that needs to be heard.

We’re collecting caregiver stories to help raise awareness, build understanding, and amplify the voices of families in our community.

Tell us about your child, your challenges, your wins, or what you wish more people understood about life with SCN8A.

Your story helps show the full range of experiences within the SCN8A community.

Share your SCN8A Caregiver Story today: https://bit.ly/scn8a_stories

For families facing SCN8A, finding clinicians who understand the disorder can be incredibly challenging. This is why mul...
05/13/2026

For families facing SCN8A, finding clinicians who understand the disorder can be incredibly challenging. This is why multidisciplinary clinics matter.

They coordinate complex care across neurology, genetics, development, therapy, medications, research, and home care. No family should have to build that system alone.

These clinics help solve that problem by bringing specialized expertise together around the child and the disorder.

At Children’s Hospital Colorado, the SCN8A/SCN2A Multidisciplinary Clinic, directed by Dr. Megan Abbott, brings broad clinical expertise and coordinated care for children with SCN8A-related disorders, with a team-based approach spanning diagnosis, treatment, neurodevelopmental care, therapies, and research-informed clinical planning.

At Children’s National Hospital in Washington, D.C., the multidisciplinary clinic led by Dr. John Schreiber brings broad clinical depth and coordinated care across rare and complex epilepsies, including SCN8A, with expertise spanning diagnosis, treatment, neurodevelopmental care, therapies, and research-informed clinical planning.

If your family is navigating SCN8A and needs more coordinated, specialized care, we encourage you to learn more about these clinics and reach out directly.

Visit the SCN8A Alliance Multidisciplinary Centers page to find clinic details, contact information, and appointment guidance: https://scn8aalliance.org/families/mdc/
Children’s Hospital Colorado Children’s National Hospital

To all the SCN8A moms - we see you. You are doing an amazing job of balancing it all - the grief, the joy, the loss the ...
05/10/2026

To all the SCN8A moms - we see you. You are doing an amazing job of balancing it all - the grief, the joy, the loss the sweetness. The meds, the equipment, the appointments, advocating with the school...
Whether your child is now struggling, thriving or has passed away, you have been the one who fights like a mother. Thank you for all you do.

We wish you a Happy Mother's Day with this beautiful piece of art made by Annelise, a young woman living with SCN8A.

💜 Support the SCN8A community with a gift that gives back.Our greeting card sets feature beautiful artwork created by me...
05/08/2026

💜 Support the SCN8A community with a gift that gives back.

Our greeting card sets feature beautiful artwork created by members of the SCN8A community and are available for a minimum donation of $26 per set.

They make a meaningful gift for someone special, or a thoughtful set to keep on hand for the moments that matter.

Supplies are limited.

Get yours today: https://scn8a.info/cards

D is for DEE 🧬DEE stands for Developmental and Epileptic Encephalopathy. It is a neurological condition where a person e...
05/06/2026

D is for DEE 🧬

DEE stands for Developmental and Epileptic Encephalopathy. It is a neurological condition where a person experiences both developmental delays and epilepsy.

In SCN8A-related disorders, DEE is a common diagnosis. Symptoms can include drug-resistant seizures, movement disorders, and cognitive challenges.

There are many genes associated with DEEs, and ongoing research is critical to better understand these conditions and develop more effective treatments.

Want to learn more about the science behind SCN8A? Visit our website: https://scn8aalliance.org/what-is-scn8a/

Did you know this? Follow along as we go through the ABCs of SCN8A and share to help spread awareness 💜

C is for Channelopathies 🧬Channelopathies are disorders that occur when ion channels in the body do not function properl...
05/01/2026

C is for Channelopathies 🧬

Channelopathies are disorders that occur when ion channels in the body do not function properly. These channels play a critical role in how brain cells communicate with each other by sending electrical signals.

In SCN8A-related disorders, changes in the Nav1.6 sodium channel can disrupt this communication. When these signals are not working correctly, it can lead to seizures and developmental challenges.

Want to learn more about the science behind SCN8A? Visit our website: https://scn8aalliance.org/what-is-scn8a/

Did you know this? Follow along as we go through the ABCs of SCN8A and share to help spread awareness

SCN8A France SCN8A España SCN8A European Federation SCN8A España SCN8A Italia SCN8A Nederland SCN8A Epilepsy and Related Disorders

Tomorrow is the last day to submit your LOI!The SCN8A Research Grants Program is accepting Letters of Intent (LOI) for t...
04/28/2026

Tomorrow is the last day to submit your LOI!

The SCN8A Research Grants Program is accepting Letters of Intent (LOI) for the 2026 funding cycle.
This collaborative funding initiative will award grants of up to $50,000 to support promising research that can improve understanding of SCN8A-related disorders and drive progress toward better care and treatment.

Researchers interested in applying are invited to submit a one-page LOI by April 29 at 11:59 PM ET.
More information and submission details: scn8agrants.org

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