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.

07/29/2026

Today, we are proud to announce the recipients of the 2026 SCN8A Research Grants Program. Funded through a collaboration between the International SCN8A Alliance, SCN8A Brazil, SCN8A France, SCN8A Nederland, SCN8A Spain, SCN8A UK & Ireland, and The Cute Syndrome Foundation, the program is awarding two $50,000 research grants to support innovative projects with the potential to advance the understanding and treatment of SCN8A-related disorders.

Congratulations to the 2026 recipients:

David Kastner, MD, PhD
Instructor, Psychiatry, UCSF Weill Institute for Neurosciences
Project: Development and Behavioral Characterization of an SCN8A Loss-of-Function Rat Line
Dr. Kastner’s team will create the first SCN8A loss-of-function rat model, providing a critical new research tool to better understand loss-of-function variants and accelerate the development of future therapies.

Chris Makinson, PhD
Assistant Professor, Department of Neurology, Columbia University Irving Medical Center
Project: Precision Molecular Actuators to Identify and Correct Pathogenic SCN8A Channel Dysfunction
Dr. Makinson’s team will use human cellular models carrying SCN8A variants to test small peptide modulators designed to correct specific problems in channel activation and inactivation, which could provide building blocks for future precision therapies.

These projects represent what the SCN8A Research Grants Program was established to support: innovative science with the potential to advance our understanding of SCN8A biology, expand therapeutic possibilities, and move the field closer to more meaningful treatments. Together, we are building a stronger foundation for discovery and creating new momentum for the global SCN8A community.

As you know, for families living with SCN8A, research is not abstract.It’s hope for safer days. Better treatments. Clear...
07/20/2026

As you know, for families living with SCN8A, research is not abstract.

It’s hope for safer days. Better treatments. Clearer answers. More time. A brighter future for our children and others.

As a granting collaborative, we have 10 grant proposals and are only $8,718 away from fully funding a 3rd!

Please give today and share this with someone who loves your child and wants to help move SCN8A research forward.

https://scn8aalliance.org/scn8agrants/

Wishing everyone a healthy, happy and safe 4th as we mark 250 years striving to ensure we live up to the Declaration of ...
07/04/2026

Wishing everyone a healthy, happy and safe 4th as we mark 250 years striving to ensure we live up to the Declaration of Independence which states that "all people are created equal and possess unalienable rights to Life, Liberty, and the pursuit of Happiness."

06/25/2026

Deadline EXTENDED! We want to hear from you! Please take a moment to fill out our survey on SCN8A priorities and our progress since the Research Roadmap in 2024. Our ED, Gabrielle Conecker, shares a message below about why hearing directly from the community is so important.

Caregiver Survey (English): https://ddesurveys.questionpro.com/8Acaregivers26
Caregiver Survey (Español): https://ddesurveys.questionpro.com/8ACaregivers26-espanol
Researcher Survey:
https://ddesurveys.questionpro.com/researcher-crn-26

Hoping all SCN8A dads had a day filled with love and cuddles. Some spent the day in the emergency room, ICU or mourning ...
06/21/2026

Hoping all SCN8A dads had a day filled with love and cuddles. Some spent the day in the emergency room, ICU or mourning the loss of their loved one. No matter where you are in your journey - we see you and honor the love you have poured into this unexpected life. Thank you!

Hoping all the SCN8A dads out there had a day filled with love and cuddles. We know some have spent the day in the emerg...
06/21/2026

Hoping all the SCN8A dads out there had a day filled with love and cuddles. We know some have spent the day in the emergency room, ICU or mourning the loss of their loved one who struggled with SCN8A. No matter where you are in your journey - we see you and honor the love you have poured into this unexpected life. We also honor all the dads out there who work to help us deliver a better life for our children - scientists, clinicians and industry dads who fight alongside us - thank you!

Families: Help Shape the Future of SCN8A ResearchThis summer, the International SCN8A Alliance will bring together famil...
06/11/2026

Families: Help Shape the Future of SCN8A Research

This summer, the International SCN8A Alliance will bring together families, clinicians, researchers, and industry partners for the first Global SCN8A Collaborative Research Network meeting.

Together, we will update the Global SCN8A Research Roadmap, first created in 2024.

But before that meeting, we need to hear from you.

Your lived experience is essential. Families know what progress feels like, where the gaps remain, and what questions matter most in daily life. Your input will help shape the research priorities discussed at this meeting and guide collaborative work for the next 2–3 years.

We have created a short family survey in English and Spanish. Each survey begins with a brief, easy-to-read summary of progress across the five Roadmap areas.

Please take a few minutes to complete the survey by June 20:

Family Survey – English:
bit.ly/Roadmap-Progress-Families

Encuesta para Familias – Español:
bit.ly/Roadmap-Progress-Spanish

We are excited to launch the new SCN8A Clinician Directory!Families often ask: Where can we find providers who understan...
06/04/2026

We are excited to launch the new SCN8A Clinician Directory!

Families often ask: Where can we find providers who understand SCN8A?

This new resource was created to help families find clinicians with experience caring for individuals with SCN8A and connect with knowledgeable, SCN8A-informed care.

🔍 Search the directory: https://scn8a.info/scn8a-clinicians

➕ Help us grow the directory: If your family works with a clinician who has experience with SCN8A, please consider recommending them for inclusion.

📝 Recommend a clinician: https://scn8a.info/scn8a-clinicians/

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!

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