SCN8A Awareness Day 2026
Автор: International SCN8A Alliance
Загружено: 2026-02-18
Просмотров: 17
Описание:
The Annual SCN8A Awareness Day brought together families, researchers, clinicians, and global partners to honor those we have lost, celebrate our community, and reflect on the progress made over the past year. The program shared major updates in research, clinical care, international collaboration, and new funding initiatives, all focused on accelerating better treatments and brighter futures for individuals living with SCN8A.
0:00 Opening – State of SCN8A
3:10 Honoring Shay & Remembering Those We’ve Lost
15:00 Global Partner Spotlight – Spain (Nascendo)
22:30 Joint Global Grant Announcement
30:30 Connor James Smith Family Grant Launch
33:51 Kalie Reever – University of Virginia Research Update
40:27 Kelly – Alliance Research & Operations Update
48:00 Base Editing Breakthrough Discussion
55:00 SCN8A Clinical Research Network & Summer Meeting
1:05:00 SCN8A Clinics – Megan Abbott (CHOC)
1:12:30 SCN8A Clinics – John Schreiber (CNMC)
1:17:20 Doris – Chat with a New Mom
1:31:55 Maddie Ryan – Studying Autism in SCN8A
1:36:01 Heather – SCN8A Writer in Residence
1:42:30 Clinical Updates & Case Conferences
1:48:31 The State of SCN8A Research Panel
(Chris Makinson, Josh Hack, Columbia Team)
2:07:00 Policy Updates
2:19:56 Manoj Patel – Gene Editing & Clinical Trial Operations
2:23:00 Funding the Future of SCN8A – Art Auction & Documentary
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