Upcoming Events: Register Now

NORSE Scientific Symposium
Early recognition, treatment and communication of NORSE/FIRES (virtual)

June 3, 2025 10:00 am-12:30 pm EST
To Register: Meeting Registration - Zoom

Lead: James J. Riviello, Jr., MD (Baylor, Texas Children’s Hospital)
Target audience: Clinicians and Scientists

10:00 am -10:05 am: Welcome and Introduction: Emphasis on Concept of Early Recognition, Early Treatment and Early Communication with the Families: Jim Riviello

10:05 am- 10:25 am: Recognition NORSE/FIRES: Clinical Course/Differential Diagnosis/Evaluation

Speakers: Ronni Wickstrom, MD (Karolinska University Hospital)

10:25 am - 10:45 am Biomarkers for NORSE/FIRES

Speakers: Raquel Farias-Moeller, MD (Milwaukee Hospital-Children's Wisconsin) and Yi-Chen Lai, MD (Baylor, Texas Children’s Hospital)

10:45 am -11:05 am Mechanisms of Refractory SE and Treatments

Speaker: Nicolas Gaspard, MD, PhD (Hôpital Erasme - ULB)

11:05 am – 11:15 am BREAK (10 minutes)

11:15 am -11:45 am Promising Immunotherapies:

Speakers: Kristen S. Fisher, DO (Baylor, Texas Children’s Hospital) Intrathecal Dexamethasone and

Eyal Muscal, MD (Baylor, Texas Children’s Hospital) Newer Immunotherapies

11:45 am – 12:10 pm Prognosis/Communication of NORSE

Speakers: Krista Eschbach, MD (Children’s Hospital – Colorado) and

Lakshmi Damerla, parent of FIRES survivor

12:10 pm -12:20 pm NORSE/FIRES Biorepository update

Speaker: Larry J. Hirsch, MD (Yale)

12:20 pm – 12:30 pm Time for Additional Questions

NORSE Family Conference
Medical Updates and Improving Doctor-Family Communication (virtual)

June 4, 2025 10:00 am – 12:30 pm EST
To Register: Meeting Registration - Zoom

Lead: Krista Eschbach, MD (Children’s Hospital – Colorado)
Target audience: Patients, Families, Clinicians and Scientists

10:00 am – 10:05 am Welcome and Introductions: Krista Eschbach

10:05 am – 10:15am Lay Summary of the NORSE Scientific Symposium and Biorepository Updates

Speaker: Larry J. Hirsch, MD (Yale)

10:15 am – 10:45 am Medical Uncertainty and Communication: Family and Clinical Perspectives

Surviving NORSE: Desirae Casas, parent

Bereaved by NORSE: Janie Yang and Ranjan Roy, parents

Clinical care of NORSE: Kristen S. Fisher, DO (Baylor, Texas Children’s Hospital) and Yi-Chen Lai, MD (Baylor, Texas Children’s Hospital)

10: 45 am – 11:15 am Neuromodulation (VNS / DBS / RNS)

Laura Mantoan, MD, PhD, (Kings College)

11:15 am – 11:30 am Q&A for all previous sessions

11:30 am – 11:35 am BREAK

11:35 am – 12:25 am Breakout Sessions

· Directing grief towards purpose

Leads: Nora Wong, PhD (NORSE Institute) and Rachel Liew, FIRES parent

· Long-term outcomes – research updates and planned projects

Krista Eschbach, MD (Children’s Hospital – Colorado) and Teneille Gofton, MD (Western Univ. Ontario)

· Antiseizure medications and side effects – how they are managed

Coral Stredny, MD (Boston Children’s Hospital)

12:25 pm – 12:30 pm Wrap-up

For references for the scientific symposium curated by James Riviello, MD., click below.

———————————————————————————————————————————————--Recordings of our 2024 Scientific Symposium and Family Conference are below:

Day 1 Scientific Symposium : Genetic update 4/29/24
A recording of this symposium is available here: https://youtu.be/WVljHEogVgY

"Investigating the genetic underpinnings of NORSE/FIRES with whole genome sequencing"
Danielle deCampo, MD, PhD, (CHOP) and
Ingo Helbig MD, (CHOP)

"Investigation of the Use of VNS in Treating NORSE"
PI: Laura Mantoan Ritter, MD, PhD with Richard Selway, MA MMedSci MB BChir BSc FRCS(neurosurg) (Charles Sykes Memorial Fund (King’s College Hospital Charity)

Day 2 NORSE/FIRES Family Conference : Research Updates, Transition of Care, Post-Intensive Care Syndrome 5/1/24
A recording of the Family Conference is available here: https://youtu.be/i-ICGNsm7mU?feature=shared

Day 3 Scientific Symposium : Metagenomics and autoantibodies. 5/9/24
The recording of this program will be available when the scientists are further along with their analyses.

"Metagenomics and Host Transcriptomics of NORSE"
Mary Rolfes-Karalius, MD, (UCSF)

"Novel autoantibodies in NORSE"
Aaron Bodansky, MD, (UCSF)

Discussion with Michael Wilson, MD, (UCSF).

Recordings of our 2023 NORSE Family Conference and Scientific Symposium are now available:

NORSE/FIRES Family Conference, June 6, 2023: https://youtu.be/QicS6txJoZ4

Recording of Medical & Scientific Symposium, June 7, 2023: https://youtu.be/hIHMjSOBGEY

———————————————————————————————————————————————--

The most recent publication on the identification and treatment for NORSE and FIRES is here:
Wickstrom R, Taraschenko O, Dilena R, Payne ET, Specchio N, Nabbout R, Koh S, Gaspard N, Hirsch LJ; International NORSE Consensus Group. International consensus recommendations for management of New Onset Refractory Status Epilepticus (NORSE) incl. Febrile Infection-Related Epilepsy Syndrome (FIRES): Statements and Supporting Evidence. Epilepsia. 2022 Aug 23;63(11):2840–64. doi: 10.1111/epi.17397. Epub ahead of print. PMID: 35997591; PMCID: PMC9828002. This is a free article available to all at this time.

Recording of the NORSE Roundtable meeting held on December 3, 2022 in conjunction with the American Epilepsy Society Conference in Nashville is available here: (https://youtu.be/IzMeeK8xXQU)

Ronny Wickstrom, MD, PhD, Karolinska University Hospital, Sweden, gives more insight to the condition of NORSE and its study in a November 2022 ILAE interview podcast here: https://www.ilae.org/journals/epigraph/sharp-waves-podcast and on Spotify: https://open.spotify.com/episode/47AdihSTc153G6zFjs4r4x?si=BePet7_7TuG92wXgjA1bxw

Our second annual Medical/Scientific Symposium and NORSE/FIRES Family Conference (virtual) were held on June 15 & 16, 2022. The programs were endorsed by the Neurocritical Care Society

Recordings of the sessions can be found here:
Clinical Symposium : https://www.youtube.com/watch?v=59dVveERN38
NORSE/FIRES Family conference: https://youtu.be/gV9m9YhBMvs

Reference for consensus definitions of NORSE and FIRES:

Hirsch, L. J., Gaspard, N., van Baalen, A., Nabbout, R., Demeret, S., Loddenkemper, T., ... & Trinka, E. (2018). Proposed consensus definitions for new‐onset refractory status epilepticus (NORSE), febrile infection‐related epilepsy syndrome (FIRES), and related conditions. Epilepsia, 59(4), 739-744.

The NORSE Institute is a 501(c)(3) charitable organization
through the fiscal sponsorship of CURE Epilepsy
www.norseinstitute.org