NORSE Scientific Symposium & Family Conference Recordings 2024
Summary:
Access the full recordings from the NORSE Institute’s 2024 Scientific Symposium and Family Conference. These virtual sessions brought together leading researchers, clinicians, and families to share the latest findings on the genetics of NORSE/FIRES, potential treatment pathways like vagus nerve stimulation (VNS), autoantibody discoveries, and support for families managing post-intensive care outcomes. A valuable resource for medical professionals and families affected by new-onset refractory status epilepticus (NORSE) and febrile infection-related epilepsy syndrome (FIRES).
Day 1 – Scientific Symposium: Genetic Update
Presentations:
Investigating the Genetic Underpinnings of NORSE/FIRES with Whole Genome Sequencing – Danielle deCampo, MD, PhD and Ingo Helbig, MD (Children’s Hospital of Philadelphia)
Investigation of the Use of VNS in Treating NORSE – Laura Mantoan Ritter, MD, PhD with Richard Selway, MA MMedSci MB BChir BSc FRCS (Neurosurg) (Supported by the Charles Sykes Memorial Fund – King’s College Hospital Charity)
Recorded: April 29, 2024
Day 2 – Family Conference: Research Updates and Post-Intensive Care Support
Highlights:
● Overview of recent NORSE/FIRES research
● Transition of care and long-term recovery
● Post-intensive care syndrome (PICS) and its impact on families and caregivers
Recorded: May 1, 2024
Day 3 – Scientific Symposium: Metagenomics and Autoantibodies
Presentations:
Metagenomics and Host Transcriptomics of NORSE – Mary Rolfes-Karalius, MD (University of California, San Francisco)
Novel Autoantibodies in NORSE – Aaron Bodansky, MD (University of California, San Francisco)
Panel Discussion – Led by Michael Wilson, MD (University of California, San Francisco)
Recorded: May 9, 2024
