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 - rare, catastrophic neurological conditions that change lives in an instant.
Through research, awareness and family support, we're improving outcomes and giving families hope.
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.
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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.
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.
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, with no history of epilepsy, often after something as simple as a mild illness.
Within hours or days, seizures escalate rapidly and become
extremely difficult, sometimes impossible, to stop.
THEIR IMPACT IS OFTEN 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
THE CHALLENGE
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50 miles over two days
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No battery power
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No shortcuts
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Pure muscle power
Could YOU take on the challenge?
SAM'S
SCOOTATHON
Scooting for Sam.
Scooting for families. Scooting for hope.
Following the phenomenal success of Sam's Scootathon 2026, which raised an incredible £8,500, we're delighted to announce that DATES FOR 2027 HAVE BEEN RELEASED!
Our flagship two-day Scootathon challenge is back for 2027! Join us as we kick-scoot 50 miles from Birmingham to Derby, raising vital funds for research, awareness and specialist family support for those affected by catastrophic epilepsies NORSE and FIRES.
Saturday 18 — Sunday 19 September 2027
SAM'S SCOOTATHON
Our epic FLAGSHIP fundraising challenge
Birmingham to Derby. Two days. One incredible challenge
Birmingham to Derby
A CHALLENGE LIKE NO OTHER!
Sam's Scootathon is an an adventure, a physical challenge and an unforgettable team experience - all rolled into one!
And here's the best bit - most of our previous participants hadn't stepped on a scooter since childhood!
You don't need experience. Just determination, a sense of adventure and a willingness to take on something a little bit bonkers for an incredibly important cause.
Every mile helps us fund pioneering research, raise awareness and support families affected by NORSE & FIRES.
BECOME A SPONSOR FOR 2027
Help us make Sam's Scootathon 2027 our biggest and best yet!
Following the incredible success of our 2026 challenge, we're inviting businesses of all sizes to get involved in 2027.
Whether through sponsorship, fundraising, or gifts in kind, your support will help us fund pioneering research, raise vital awareness and provide specialist family support for those affected by the rare epilepsies NORSE & FIRES.
Our 2027 sponsorship opportunities are coming soon! In the meantime, explore our 2026 Sponsorship Pack or get in touch to find out how your business can make a difference.
OUR LATEST NEWS
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OUR LATEST BLOGS
We're always looking for guest contributors to our blog, especially from families with lived experience of NORSE or FIRES. We want to share the reality of how these conditions affect lives - the challenges, progress, resilience, adaptations, milestones and moments of hope, but also grief, loss and the experiences of families bereaved by NORSE and FIRES.
We welcome voices of children and young people too, alongside insights from clinicians and researchers, and our wonderful supporters.
Interested in contributing? We'd love to hear from you. Email us with a brief outline of what you'd like to share and send to
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