BE A HERO.
Sam’s Superheroes Foundation was founded after Rachel Liew lost her five-year-old son, Sam, to FIRES.
For families facing NORSE and FIRES.
We fund research, raise awareness, and support children, adults and families facing NORSE and FIRES.
We are the UK's only registered charity dedicated to supporting those affected by the rare and catastrophic epilepsies NORSE and FIRES.
NORSE & FIRES
NORSE and FIRES are rare, catastrophic neurological conditions that cause the sudden onset of relentless, life-threatening seizures in previously healthy children and adults with no history of epilepsy.
They are neurological emergencies that require urgent admission to intensive care. The seizures are exceptionally difficult — sometimes impossible — to stop.
There is currently no cure, the underlying cause remains poorly understood, and around one in five people do not survive the acute stage.
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 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 — and unimaginable heartbreak for his family.
After experiencing first-hand the devastating impact of NORSE and FIRES, and seeing and how little awareness, research and dedicated family support exisited for families in the UK, Sam's mum, Rachel, founded Sam's Superheroes Foundation.
Today, Sam's charity works to improve outcomes for children, adults and families affected by NORSE and FIRES through research, awareness and family support.
For Sam. For every family.
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MORE ABOUT 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 most commonly affect children and young adults, and strike without warning in previously healthy people, often after something as simple as a mild illness.
Within hours or days, seizures escalate rapidly and become extremely difficult — sometimes impossible — to stop. Many patients spend weeks or months in intensive care, in medically induced comas as doctors fight to control the seizures and protect the brain from damage.
THE IMPACT IS 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 poorly understood
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Recovery is possible, but survivors can be left with lifelong neurological disability, chronic epilepsy, and complex long-term care needs
REAL FAMILIES. REAL STORIES.
NORSE and FIRES may be rare, but each year they strike previously healthy children and adults completely without warning. Their catastrophic impact is profound — lives change in an instant.
Every life touched by NORSE and FIRES is changed forever. Behind every face is a story of unimaginable courage, heartbreak, hope and love. These stories need to be shared, heard and remembered.
Here are just some of the children and adults affected by NORSE and FIRES across the UK. The courage of every family who shares their personal story cannot be overstated.
Tap each photo to read their story.
WHAT WE DO
Everything we do is shaped by lived experience and driven by one clear aim: to improve outcomes for children, adults and families affected by NORSE and FIRES through research, awareness and family support.
THERAPY DOG SERVICE
Our Therapy Dog Service, supports children's emotional wellbeing across Derbyshire and surrounding areas.
It's led by Daisy, Sam's beloved black Labrador, and Tara Pegley-Stanger, an experienced and highly respected teacher from Derby.
Through one-to-one and group sessions, Daisy and Tara help children build confidence, reduce anxiety and bring light to difficult days.
We support over 50 children every week across schools and community settings.
Daisy's impact helped us win Charity of the Year 2025.
Learn more about Daisy's award-winning work, or contact Tara to see how our Therapy Dog Service can support your school or organisation.
Sam & Daisy
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Daisy
Tara & Daisy
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Daisy at School
A CHALLENGE LIKE NO OTHER
Its a challenge, an adventure and a movement all rolled into one! Help fund life-changing research, raise awareness, and support families affected by NORSE and FIRES.
📅Saturday 19 to Sunday 20 September 2026
Register now. Limited places.
Scooters included in £45 registration fee.
THE CHALLENGE
55 miles.
Two Days.
No battery power.
No shortcuts.
Just muscle power.
Featured on BBC East Midlands Today
BECOME A SCOOTATHON SPONSOR
Our 2024 Scootathon helped fund our £110,000 UK NORSE & FIRES research project.
DID YOU KNOW?
Partner with us to help make Sam's Scootathon 2026 a success. Through sponsorship, fundraising, or gifts in kind, you'll help fund pioneering research, raise awareness of NORSE and FIRES, and provide vital family support for children and adults facing these devastating conditions.
EVENT WISH LIST
Explore our Event Wish List to discover how your business could support Sam's Scootathon through gifts in kind.
Help Continue Sam's Legacy
Every donation helps us fund research, awareness and support families affected by NORSE and FIRES.
Together, we are helping to improve outcomes for people affected by NORSE and FIRES and create a better future for patients and families.
Your support makes this possible.
STAY CONNECTED - SIGN UP TO OUR NEWSLETTER!
Stay up to date with the latest news on NORSE and FIRES, real family stories, research updates, 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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