BE A HERO.
Sam’s Superheroes Foundation is the UK’s only registered charity focused on supporting people and families affected by NORSE and FIRES. These rare, devastating neurological conditions cause the sudden onset of relentless, life-threatening seizures in healthy people. We fund vital research, raise awareness, and support families facing the unimaginable.
For families facing NORSE & FIRES.
WHAT IS NORSE & FIRES?
New Onset Refractory Status Epilepticus (NORSE) and Febrile Infection Related Epilepsy Syndrome (FIRES) are rare, life-threatening neurological emergencies that cause the sudden onset of relentless, non-stop seizures, without a clear underlying cause.
They strike without warning, in previously healthy people, often after something as simple as a mild illness. They most commonly affect children and young adults.
Within hours or days, seizures escalate rapidly and become extremely difficult — sometimes impossible — to stop. Many patients spend weeks or months in intensive care, placed into medically induced comas as doctors fight to stop the seizures and protect the brain from damage.
The outcomes are often devastating.
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Around 1 in 5 people do not survive
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There is currently no cure
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The underlying cause is still poorly understood
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While some recover, many survivors are left with lifelong neurological disability, chronic epilepsy, and complex long-term 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 relentless, non-stop 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.
Sam's mum, Rachel, founded Sam's Superheroes Foundation to try to prevent other families from having to endure the same heartbreak.
For Sam. For every family.
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REAL PEOPLE, REAL STORIES
NORSE and FIRES are rare, but their impact is very real. Behind every diagnosis is a person, a family, and a story that matters — stories that deserve to be seen and heard.
Tap each story to read more.
SAM’S SCOOTATHON IS BACK!
Join us for our flagship fundraising challenge — a two-day, 55-mile kick scoot from Aston University in Birmingham to Sam’s hometown of Derby.
Push yourself. Be part of the team. Help fund life-changing research, raise awareness, and support families affected by NORSE and FIRES.
📅 Saturday 19 - Sunday 20 September 2026
As Featured on BBC East Midlands Today.
FUNDING NORSE & FIRES RESEARCH
In partnership with the Epilepsy Research Institute, we are funding £110,000 of pioneering UK research into NORSE and FIRES - helping to deepen understanding, improve outcomes, and move closer to life-saving answers.
This is just the beginning - help us go further. Every donation supports our work across research, awareness and family support.
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.
MEET DAISY, OUR
THERAPY DOG
Daisy was Sam’s beloved black Labrador, who visited him in hospital, bringing comfort to so many - and that was the beginning of her therapy dog journey.
Today, Daisy carries Sam’s legacy forward as our therapy dog, providing vital support for children with emotional, mental and physical wellbeing needs.
Our therapy dog programme is a paid service, with some funded places to give back to our community. It provides vital income to support our core work across research, awareness and family support.
Our service is led by Tara Pegley-Stanger, an experienced and highly regarded Derby teacher, who is passionate about how animals can support children.
We deliver animal-assisted interventions across schools and organisations in Derbyshire and surrounding areas, including specialist settings with consistently positive feedback from the schools and children we support.
Sam & Daisy
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Daisy
Tara & Daisy
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Daisy at School
OUR AMAZING CHARITY PARTNERS
A huge thank you to our incredible charity partners. Your support powers everything we do - from funding vital research, to raising awareness, to supporting families through the unimaginable.
As a small but mighty charity, we work closely with families, clinicians and researchers. This means our partners see the real, tangible difference their support makes — directly impacting lives when it matters most.
Together, we are driving change, improving understanding, and strengthening support for families affected by NORSE and FIRES — and ensuring they are finally seen and heard.
If your business or organisation would like to partner with us, we would love to hear from you: rachel@samssuperheroes.co.uk
We are incredibly grateful to all of our partners, past and present, for the difference they have made.
YOU can Support Vital Research, Raise Awareness and Help Families in Need
Every donation helps us fund vital research, raise awareness, and support families facing the unimaginable — NORSE and FIRES.
These catastrophic conditions can change lives in an instant. Your support helps us move faster towards better understanding, more effective treatments, and real hope for families who need it most.
STAY CONNECTED - SIGN UP TO OUR NEWSLETTER!
Stay up to date with the latest news on NORSE and FIRES, real family stories, exciting fundraising opportunities, and how your support is making a difference.
We will only send occasional, meaningful updates.
OUR LATEST NEWS
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A MOTHER'S DIARY...
