SCN8A Alliance – Dad’s Meet-Up

This is a regular space for families to come together, connect, ask questions and build community. Newly diagnosed with SCN8A? Not so newly diagnosed but still have questions? Want to connect with and support other SCN8A families? Join Us! https://us02web.zoom.us/meeting/register/tZAoduyqqD8tHNXWBkTuTlNUus-hZ9Zi4UuY

Incontro con le famiglie italiane e l’Alleanza Internazionale SCN8A – Meeting with Italian families and the International SCN8A Alliance

Unisciti a noi per connetterti con il Dr. Hammer, un genitore SCN8A e il genetista responsabile della scoperta dell'associazione del gene SCN8A con l'epilessia pediatrica. Avrai la possibilità di condividere il tuo viaggio, porre domande, conoscere gli ultimi sviluppi di SCN8A E connetterti con altre famiglie italiane. Questo incontro si svolge in collaborazione con i […]

POSTPONED until August 5 – SCN8A Treatment Guidelines Update!

POSTPONED UNTIL AUGUST 5th We have new results in and want to share them with you!  In this session, we will be providing the community an update on the Diagnosis & Treatment Guidelines process. We'll walk through the process, share some preliminary results and outline what the next steps are. We also want to hear […]

An Update on SCN8A Diagnosis & Treatment Guidelines

We have new results in and want to share them with you!  In this session, we will be providing the community an update on the Diagnosis & Treatment Guidelines process. We’ll walk through the process, share some preliminary results and outline what the next steps are. We also want to hear from you! The guidelines […]

SCN8A Network Meeting: Rotating Foreign Language

Connect and learn! Network meetings are your place for LIVE support and research updates. SCN8A networks, sponsored by the SCN8A Alliance, offer opportunities to connect with Dr. Hammer, an SCN8A parent and the Genetic Scientist responsible for the discovery of the SCN8A gene's association with pediatric epilepsy. These groups will provide you with a chance […]

SCN8A Network Meeting: Newly Diagnosed

Connect and learn! Network meetings are your place for LIVE support and research updates. SCN8A networks, sponsored by the SCN8A Alliance, offer opportunities to connect with Dr. Hammer, an SCN8A parent and the Genetic Scientist responsible for the discovery of the SCN8A gene's association with pediatric epilepsy. These groups will provide you with a chance […]

SCN8A Network Meeting: Loss of Function Families and/or Behavioral & Emotional Concerns

Connect and learn! Variant networks are your place for LIVE support and research updates. SCN8A networks, sponsored by the SCN8A Alliance, offer quarterly opportunities to connect with Dr. Hammer, an SCN8A parent and the Genetic Scientist responsible for the discovery of the SCN8A gene’s association with pediatric epilepsy. These groups will provide you with a […]

SCN8A Caregivers Connect

A special space for caregivers supporting those with SCN8A to find both solace and strength in a community that knows what life with SCN8A means. You can share challenges, gain insights into care techniques, and stay abreast of research and resources to help on your caregiving journey. Engage with Dr. Hammer and a global community […]

 Navigating the Challenges of Severely Impacted Children

A dedicated gathering for families and caregivers of children facing the most comprehensively challenging forms of SCN8A. Share stories, seek support, and gain insights into treatments, research, and coping strategies tailored for those at the sharper end of the SCN8A spectrum. Connect with Dr. Hammer and a global community that understands and supports your journey. […]

Understanding Mild/Moderate SCN8A

Explore the nuances and unique challenges faced by children with mild to moderate SCN8A impacts. Connect with other families on similar journeys, gain insights from research updates, and find resources tailored to this specific form of SCN8A. Engage with Dr. Hammer and a range of other families who are here to listen and support you. […]

SCN2A & SCN8A Town Hall about PRAX-562 Trial at Boston Children’s

Boston Children’s Hospital is now recruiting SCN2A & SCN8A patients for the PRAX-562 study. Please join us for a virtual session with Heather Olson, MD to: - Understand if your child is eligible for the trial - Hear about potential benefits of the this new treatment in development for SCN2A and SCN8A - Learn what […]

SCN8Aの洞察 日本のコミュニティ向け – SCN8A Insights for the Japanese Community

日本語で開催される、日本語話者のコミュニティ向けのSCN8Aネットワークに参加しましょう!人間の医学翻訳者のサポートを受けながら、Dr. Hammerに接続し、質問をし、最新の研究、治療オプション、およびコーピング戦略についての洞察を得ましょう。他の日本語を話す家族と交流し、経験を共有し、文化的および言語的ニーズに特別に適したリソースを見つけましょう。Dr. HammerおよびグローバルなSCN8Aコミュニティと接続することで包括性を体験しましょう。 Join our SCN8A network for the Japanese-speaking community held in Japanese! Connect with and ask questions of Dr. Hammer, gain insights into the latest research, treatment options, and coping strategies, facilitated by a human medical translator. Engage with other Japanese-speaking families, share experiences, and find resources uniquely suited to your cultural and […]

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.

   

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