£110,000 UK NORSE & FIRES Research Project Approved - Starting 2026

15 hours ago
4 min read

We are absolutely delighted to announce our first £110,000 NORSE and FIRES epilepsy research collaboration with the Epilepsy Research Institute has now been formally approved and included within the Institute’s national research portfolio for 2026/27. It will be starting towards the end of this year.

The Research Aims

The research aims to improve understanding of long-term outcomes following NORSE and FIRES and identify early biomarkers that predict recovery trajectories and risk of ongoing complications.

In the medium term, these findings could help guide both acute and long-term clinical management by enabling earlier, more personalised treatment decisions.

Ultimately, the study could improve prognosis, support, and quality of life for survivors by informing better-targeted care strategies.

This is undoubtedly the biggest, proudest and most impactful work our charity has achieved to date. This is only the second dedicated UK research project focused specifically on NORSE and FIRES.

The £110,000 research project we have worked so hard to drive forwards, champion and co-fund will officially commence this year.

Driving forwards meaningful change in a rare disease space is not easy. Whilst this collaboration was formally signed last year - the research progressing to this stage was never guaranteed.

The Grant Round

The Grant Round for our PhD Studentship to investigate NORSE & FIRES commenced in September 2025, where researchers were required to submit their preliminary applications for funding.

The research assessment and approval process takes approximately seven months and involves rigorous review by the Epilepsy Research Institute's Scientific Advisory Committee — a panel made up of some of the country’s leading neurologists, neuroscientists and epilepsy researchers. They hold decades of experience and work at the highest levels of clinical care and scientific research.

Applications are not only reviewed by the Scientific Advisory Committee, but also undergo international peer review by epilepsy experts from across the globe.

Feedback from the extensive expert analysis is collated before the Scientific Advisory Committee meet to discuss and score each application in detail. The highest scoring applications are then recommended for approval and inclusion within the Institute's national research portfolio.

About This research

In collaboration with the Epilepsy Research Institute and leading researchers at UCL Great Ormond Street Institute of Child Health, this research project will focus on improving understanding of NORSE and FIRES, including long-term outcomes, recovery prediction and potential biomarkers.

The Research Team

We feel incredibly privileged to have such an exceptional research team leading this study:

Dr Marios Kaliakatsos a Consultant Paediatric Neurologist at Great Ormond Street Hospital and Associate Professor at the UCL Great Ormond Street Institute of Child Health, with extensive expertise in complex childhood epilepsies and NORSE/FIRES.

Professor Torsten Baldeweg an internationally respected expert in neurodevelopment, epilepsy and neurophysiology within the Developmental Neurosciences Department at the UCL Great Ormond Street Institute of Child Health.

Together with PhD researcher Sharon Huang, they bring world-class expertise, passion and credibility to a project we truly believe has the potential to make a meaningful difference to the future understanding of NORSE and FIRES.

Watch our video below to learn more about this groundbreaking research project and hear from the supervisors leading it.

Why This Research Is Important

NORSE and FIRES are rare types of epilepsy that are catastrophic and present suddenly as neurological emergencies. They affect previously healthy children and adults with no history of epilepsy and change lives in an instant. One in five won’t survive the acute stage, and survivors may face significant neurological disability, although some survivors will return to normal lives. There is no cure and only limited understanding as to their cause.

For families affected by these devastating conditions, the silence around so many fundamental questions can feel deafening such as:

What causes NORSE and FIRES?
Why can't we predict recovery outcomes?
Why are previously healthy children and adults, without any history of epilepsy, suddenly struck down with this?
Why do some people survive whilst others do not?
Why do outcomes vary so vastly?
And why, despite the catastrophic impact of these conditions, are there still so few answers, treatments and dedicated research studies?

We hope this research project will play a meaningful role in helping to provide answers to some of the many questions that currently remain unanswered for families affected by NORSE and FIRES.

At The Heart Of This Is Sam

What makes this research achievement even more extraordinary is that this has been achieved in such a short space of time by a charity born from love, loss and an unwavering determination to drive meaningful change.

At the very heart of all of this is Sam.

A little boy who should still be here.

If Sam had not been suddenly and catastrophically struck down by FIRES in 2021 aged just five years old, none of this would be happening.

Following Sam’s death, his mum quickly discovered how little awareness, understanding and knowledge existed around NORSE and FIRES — not just in the UK, but globally. Yet families across the UK continue to be affected every single year.

We didn’t just want to raise awareness.

We wanted to help drive meaningful change.

How We Got Here

Today, seeing this research formally recognised and moving forwards feels incredibly emotional — not just for our charity, but for every family affected by NORSE and FIRES who desperately need answers, understanding and hope for the future.

To every single person, business and organisation who has believed in our mission to create greater awareness, support and research into NORSE and FIRES, donated, fundraised, attended events, supported Sam’s Big Scoot, bought raffle tickets or shared our posts — THANK YOU.

None of this would have been possible without our phenomenal community of supporters who have stood beside us over the past five years.

Every donation, fundraiser, raffle ticket, event attendee, social media share and message of support has helped make this happen.

We would also like to say a huge thank you to the Epilepsy Research Institute for co-funding this research project and believing in our mission to help drive meaningful change in the NORSE and FIRES space.

And finally, thank you to the UK researchers and clinicians so dedicated to leading the search for answers, together with the NORSE Institute in America who continue to help drive the global mission forwards.

For Joe. For Adrian. For little Sam. For Big Sam. For A-Ling.

For every family affected by NORSE & FIRES.