Our Severely Impacted Children meetings will primarily focus on the issues important to children who are Non-ambulatory, G/J fed, and have Global Developmental Delays. 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 […]
地域および変種のネットワークは、ライブサポートと研究の更新のためのあなたの場所です。 SCN8Aアライアンスが主催するSCN8aネットワークは、scn8aの親であり、scn8a遺伝子と小児てんかんとの関連の発見を担当する遺伝科学者であるHammer博士と接続する機会を四半期ごとに提供しています。 これらのグループは、あなたの旅を共有し、あなたの経験に関連する質問をし、あなたの地域の地元のリソースについて議論し、最新のSCN8Aの開発につ Connect and learn! Regional and 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 […]
Our Mild/Moderately Impacted Children meetings will primarily focus on the issues of Seizure Control, Medications, Development, and Therapies. 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 […]
Conecte-se e aprenda! As redes regionais e variantes são o seu lugar para suporte ao vivo e atualizações de pesquisa. As redes SCN8A, patrocinadas pela SCN8A Alliance, oferecem oportunidades trimestrais de contato com o Dr. Hammer, um pai SCN8A e o cientista genético responsável pela descoberta da associação do gene SCN8A com a epilepsia pediátrica. […]
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
Join us for our series of presentations led by Dr. Michael Hammer, an SCN8A parent and geneticist who first discovered the SCN8A gene’s association with epilepsy. In these meetings, Dr. Hammer will present his new and exciting findings through his Hammer Lab research, as well as updates from the International SCN8A Registry Research Study. https://us02web.zoom.us/meeting/register/tZ0ldu2trz4uHdV4NpyVgxjM5SlP7ZiOr1kE
Join us for a discussion about inheritance and mosaicism in SCN8A. In this session, we will discuss how inheritance and mosaicism happen and what we are learning about cases of inherited SCN8A. We will also look forward to hearing about your experiences and share some case study experiences with SCN8A carrier families. https://us02web.zoom.us/meeting/register/tZUsf-qhpzojHNC4nDHG0q0FHAfvGG76q9Kc
This is a regular space for families to come together, connect, ask questions and build community. We will be centering these meetings around a topic based on community feedback for the issues that are important to our kids (ex: feeding, GI, school, IEPs, etc.). Newly diagnosed with SCN8A? Not so newly diagnosed but still have […]
Verbind en leer! Netwerkbijeenkomsten zijn jouw plek voor LIVE ondersteuning en onderzoeksupdates. SCN8A-netwerken, gesponsord door de SCN8A Alliance, bieden mogelijkheden om in contact te komen met Dr. Hammer, een SCN8A-ouder en de genetische wetenschapper die verantwoordelijk is voor de ontdekking van de associatie van het SCN8A-gen met pediatrische epilepsie. Deze groepen bieden u de kans […]
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 […]
Last Fall 2022, a new consortium - Epilepsies Action Network (EAN) - launched to develop national government relations strategies to increase federal funding for research, translation, care, and cures for the epilepsies. We welcome ALL epilepsies stakeholders who share our vision and mission. Register here to hear their spring updates!
Verbind en leer! Netwerkbijeenkomsten zijn jouw plek voor LIVE ondersteuning en onderzoeksupdates. SCN8A-netwerken, gesponsord door de SCN8A Alliance, bieden mogelijkheden om in contact te komen met Dr. Hammer, een SCN8A-ouder en de genetische wetenschapper die verantwoordelijk is voor de ontdekking van de associatie van het SCN8A-gen met pediatrische epilepsie. Deze groepen bieden u de kans […]
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.
– Keep Exploring –
IMPORTANT: While this consensus data provides new and valuable insights about best practices in the diagnosis and treatment of SCN8A, this is not medical advice. It can inform clinicians and caregivers alike in developing optimal treatment plans for each individual.
