NORSE and FIRES Raised in UK Parliament for the First Time
- Apr 17
- 2 min read
Updated: May 30
April 2026 was another landmark moment for Sam's Superheroes Foundation — and for families affected by NORSE and FIRES across the UK and around the world.
NORSE and FIRES were raised in UK Parliament for the first time when Samantha Niblett MP spoke in the House of Commons on behalf of Sam's Superheroes Foundation and families affected by these devastating neurological conditions.
This was the first time NORSE and FIRES had been raised in UK Parliament — and, to our knowledge, in any Parliament around the world.
Why this Matters
For families who have suffered in silence for far too long, seeing NORSE and FIRES finally recognised in UK Parliament was more than a milestone — it was a sign that change is possible.
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 better 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, MPs, businesses and supporters come together with a shared determination to create change — and this is only the beginning.
Next Steps
Next steps include securing a meeting with a Government Minister and exploring the possibility of a Westminster Hall Debate.
I am feeling incredibly grateful for all the work, collaboration and support happening behind the scenes right now.
A huge thank you to Samantha, and her fabulous team for listening and for taking urgent action on our story.
We are incredibly busy — but busy with purpose.
For Joe. For Adrian. For Sam. For every family affected by NORSE & FIRES.
To read more about our families and their stories, visit our Meet Our Families page.
Rachel, Sam's mum
Founder, Trustee & Director
Sam's Superheroes Foundation
Research | Awareness | Family Support
For rare epilepsies — NORSE & FIRES.
Comments