BE A HERO.
Together, we're changing the future.
We are the UK's only registered charity dedicated to
improving outcomes for people affected by NORSE and FIRES. They are rare, catastrophic epilepsy-related conditions that change lives in an instant.
Through research, awareness and family support, we're improving outcomes and giving families hope.
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.
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) most commonly affect children and young adults. They 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.
THE IMPACT CAN BE DEVASTATING
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Around 1 in 5 people do not survive the acute stage.
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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.
For families affected by NORSE and FIRES, life changes forever. Behind every face is a story of unimaginable courage, heartbreak, hope and love. These stories need to be shared, heard and remembered.
Every story shared takes extraordinary courage.
Here are just some of the children and adults affected by NORSE and FIRES across the UK.
Tap each photo to read their story.
THERAPY DOG SERVICE
Our Therapy Dog Service supports children's emotional wellbeing across Derbyshire and surrounding areas, while also generating income to support the wider work of our charity.
At the heart of the service are 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, Tara and Daisy help children build confidence, reduce anxiety, feel calmer, safer and bring light to difficult days.
Each week, they support more than 50 children across schools, community and specialist settings.
Daisy's impact helped us win Charity of the Year 2025 and runner up 2026.
Learn more about Daisy's award-winning work and the difference she is making for children.
Sam & Daisy
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Daisy
Tara & Daisy
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Daisy at School
SAM'S 55 MILE
SCOOTATHON
Scoot for Sam.
Scoot for families. Scoot for hope.
THE KICK SCOOT CHALLENGE
55 miles over two days.
No battery power.
No shortcuts.
Just muscle power.
Join our flagship 55 mile, two-day Scootathon as we kick scoot from Birmingham to Derby, raising vital funds for research, awareness and specialist family support for those affected by NORSE and FIRES.
Saturday 19 — Sunday 20 Sept 2026
SAM'S SCOOTATHON
Our 2026 epic fundraising challenge.
55 miles. Two days. One incredible challenge.
19 - 20 September
Birmingham to Derby
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.
BECOME A SPONSOR
DID YOU KNOW?
Our 2024 Scootathon helped fund our £110,000 UK NORSE & FIRES research project.
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.
OUR SPONSORS & SUPPORTERS
Meet the incredible businesses already supporting Sam's Scootathon 2026. Visit our Sponsors section to see who's helping making a difference.
OUR LATEST NEWS
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