BE A HERO.
Sam’s Superheroes Foundation is the UK’s only registered charity focused on supporting people affected by the rare and devastating epilepsies NORSE and FIRES. We fund essential research, raise awareness, and stand alongside families facing the unimaginable.
For families facing NORSE & FIRES.
ABOUT NORSE & FIRES
New Onset Refractory Status Epilepticus (NORSE) and Febrile Infection Related Epilepsy Syndrome (FIRES) are rare, life-threatening neurological emergencies.
They come out of nowhere, often after a mild illness, and mostly affect children and young people.
Within hours or days, seizures escalate into relentless, hard-to-control activity. Many patients spend weeks or months in intensive care, often in medically induced comas.
Outcomes are devastating.
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The underlying cause remains poorly understood.
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There is currently no known cure.
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Around 1 in 5 people do not survive.
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While recovery is possible, survivors are frequently left with significant life-long neurological disability, chronic epilepsy and complex care needs.
OUR STORY
Sam Liew, from Derby in the UK, was five years old. Happy. Healthy. Full of life. Then FIRES struck without warning.
What began as a mild virus, suddenly turned into weeks of non-stop aggressive seizures, a medically induced coma, and devastating brain damage.
Sam died in May 2021, just seven weeks after he first fell ill. His relentless seizures could not be stopped causing catastrophic and irreversible brain damage.
We created Sam's Superheroes Foundation to try and prevent other families from having to endure the same heartbreak.
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OUR WORK
Everything we do is shaped by lived experience and driven by one clear aim, to improve outcomes for people affected by NORSE and FIRES through research, awareness and supporting families.
REAL PEOPLE, REAL STORIES
NORSE and FIRES are rare, but the impact is very real. Behind every diagnosis is a person, a family, and a story that matters.
£110,000 UK-led research collaboration!
In partnership with the Epilepsy Research Institute, we are funding pioneering research into NORSE and FIRES, helping to deepen understanding, improve treatments, and move closer to life-saving answers.
HELP us FIGHT NORSE & FIRES
Every donation helps Sam’s Superheroes Foundation, a registered charity, fund life-saving research, raise awareness, and support families affected by NORSE and FIRES.
These rare conditions can change a life in a matter of hours. Your support helps us move faster towards better treatments, earlier recognition, and real hope for families.
Dr Kaliakatsos
Consultant Neurologist
Great Ormond Street Hospital
FIRES patients and their families are etched in the clinician's heart forever. Scoot with us in Sam's memory to support further research. Let's make Sam one
of the last children to lose their
life or childhood due to this devasting disease.
BECOME a FUNDRAISING HERO!
There are so many ways to support Sam's Superheroes - from cake bakes and fun runs to once-in-a-lifetime challenges.
Children, adults, schools, workplaces and community groups - everyone can play a part.
Every pound raised helps to:
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Fund life-saving research.
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Raise urgent awareness.
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Strengthen the support for families facing NORSE & FIRES.
Because no family should face this alone.
Sam’s Big Scootathon 2026!
This is our flag ship fundraiser! It's a two-day, 55-mile KICK SCOOT which takes you from Aston University in Birmingham to Sam’s hometown of Derby.
No electric scooters. Just pure muscle power, determination, and teamwork!
Along the way, we raise awareness, share our story, and spark conversations in every community we pass through.
📅 Saturday 19 - Sunday 20 September 2026
No experience is needed. Scooter hire available.
Once you try kick-scooting...you’ll be hooked!
Individuals, friends and company teams are all welcome.
As Featured on BBC East Midlands Today.
MEET DAISY, OUR CHARITY AMBASSADOR
She was Sam’s beloved black Labrador, who brought comfort to him in critical care. Without anyone realising at the time, that was the beginning of her journey.
Today, Daisy carries Sam’s legacy forward as the Charity Ambassador for Sam’s Superheroes Foundation, while also working as a therapy animal, supporting children with emotional, mental and communication challenges.
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