£50,000 Milestone Reached for UK-Led NORSE & FIRES Research!

Jan 13
2 min read

Updated: May 30

We're thrilled to share more huge news.

On Christmas day 2025, we officially reached our £50,000 fundraising milestone — representing our charity’s contribution towards a £110,000 UK research collaboration with the Epilepsy Research Institute to support UK-led research into NORSE and FIRES.

We reached this milestone on Christmas day 2025 after an incredibly generous £4,000 donation from local businessman Mark Gregory, of Derbyshire Contracting Services. He gave it as a Christmas gift in Sam's memory, helped us finally get over the line.

This fundraising milestone marks a significant step forwards for UK-led research into NORSE and FIRES — as it is helping to support only the second dedicated UK research study into these devastating rare epilepsies. The research application process is now underway, and we hope to see the study commence in Autumn 2026.

The final research project is not yet confirmed, as researchers must first go through a rigorous application and review process led by the Epilepsy Research Institute's Scientific Advisory Committee.

Why this £50,000 Fundraising Milestone is Important

Understanding of NORSE and FIRES is still extremely limited. We still do not know what causes these devastating conditions, why outcomes vary so dramatically between individuals, and there is currently no known cure.

Ultimately, research is the only way we will ever truly understand NORSE and FIRES and help prevent other children, adults and families from facing the devastation these conditions can cause.

We are now seeing what can happen when families, researchers, clinicians and supporters come together with a shared determination to create change - and this is only the beginning!

We’ll continue to share updates as the research progresses.

For Joe. For Adrian. For Sam. For every family affected by NORSE & FIRES.