Caregiver Connect: Open Discussion & Newly Diagnosed

A dedicated space for parents and caregivers, including those newly navigating an SCN8A diagnosis, to find answers, practical advice, and connection. Learn what SCN8A means for your child, how to manage symptoms, and what treatment options are available. Gain insights into the latest research, hear from other families, and connect directly with Dr. Hammer, an […]

Addressing Severe Challenges: Respiratory Issues, Urinary Concerns, Intractable Seizures, Therapies, Respite, and More

This is a dedicated gathering for families and caregivers of children facing the most comprehensively challenging forms of SCN8A, including severe respiratory issues, urinary concerns, intractable seizures, and the need for therapies and respite. Share stories, seek support, and gain insights into treatments, research, and coping strategies tailored for those at the sharper end of […]

Caregiver Connect: Open Discussion & Newly Diagnosed

A dedicated space for parents and caregivers, including those newly navigating an SCN8A diagnosis, to find answers, practical advice, and connection. Learn what SCN8A means for your child, how to manage symptoms, and what treatment options are available. Gain insights into the latest research, hear from other families, and connect directly with Dr. Hammer, an […]

2025 International SCN8A Awareness Day Live Event – Transforming SCN8A

Every year on International SCN8A Awareness Day, February 9th, we host a live event to celebrate where we've been over the previous year and where we're headed in the year(s) to come. With lots of mini-chats, we will discuss the State of SCN8A. Join us to hear from a lineup of doctors, researchers, caregivers, and […]

Addressing Behavioral Challenges: LOF, Mild GOF, and Impacts on School, Autism, Speech, and More

Join our SCN8A family meetings for live support and the latest research updates on behavioral challenges such as LOF and mild GOF, including behaviors, school-related issues, autism, speech, and more. Sponsored by the International SCN8A Alliance, you can talk directly with Dr. Hammer, both an SCN8A parent and the scientist who identified the SCN8A gene’s […]

SCN8A Grandparents Meetup

Join us for a special gathering exclusively for grandparents of children with SCN8A, led by our Co-Founder and SCN8A grandmother, JayEtta Hecker. This is a warm and welcoming space to share your unique experiences, exchange support, and connect with others who understand your journey. Whether you’re seeking advice, offering encouragement, or simply looking to connect, […]

Caregiver Connect: Open Discussion & Newly Diagnosed

A dedicated space for parents and caregivers, including those newly navigating an SCN8A diagnosis, to find answers, practical advice, and connection. Learn what SCN8A means for your child, how to manage symptoms, and what treatment options are available. Gain insights into the latest research, hear from other families, and connect directly with Dr. Hammer, an […]

Caregiver Connect: Open Discussion & Newly Diagnosed

A dedicated space for parents and caregivers, including those newly navigating an SCN8A diagnosis, to find answers, practical advice, and connection. Learn what SCN8A means for your child, how to manage symptoms, and what treatment options are available. Gain insights into the latest research, hear from other families, and connect directly with Dr. Hammer, an […]

Caregiver Connect: Open Discussion & Newly Diagnosed

A dedicated space for parents and caregivers, including those newly navigating an SCN8A diagnosis, to find answers, practical advice, and connection. Learn what SCN8A means for your child, how to manage symptoms, and what treatment options are available. Gain insights into the latest research, hear from other families, and connect directly with Dr. Hammer, an […]

Dr. Hammer’s SCN8A Research Update

Join us for an enlightening session with Dr. Hammer, the renowned geneticist behind the discovery that SCN8A can cause epilepsy,. Dive deep into the latest data, ask questions, and gain a clearer understanding of SCN8A's intricacies. Be part of an inclusive community dedicated to understanding and supporting the SCN8A journey. These meetings are powered by […]

We would like to extend our thanks to Neurocrine Biosciences and Praxis Precision Medicines for their support of these meetings which bring improved quality of life to families and allows them opportunities to learn, connect, and contribute to the understanding of SCN8A.