BE A HERO.
Sam’s Superheroes Foundation is the UK’s only registered charity dedicated to supporting families affected by NORSE and FIRES — rare, devastating neurological conditions that cause the sudden onset of relentless, life-threatening seizures in previously healthy children and adults.
For families facing NORSE and FIRES.
We fund vital research, raise awareness, and support families facing the unimaginable.
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.
As Sam is not the only person affected by this devastating condition, his mum, Rachel, founded Sam's Superheroes Foundation to help prevent other families from enduring the same heartbreak.
For Sam. For every family.
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WHAT ARE 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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While some recover, many survivors are left with lifelong neurological disability, chronic epilepsy, and complex long-term care needs.
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.
DONATE JUST £5
In Sam's memory, donate £5 — one pound for each year of his precious life.
Every gift helps us fund vital research, raise awareness, and support families affected by these devastating conditions.
SCOOTATHON
2026
Registration is Open!
Sam's Scootathon is back for 2026! Join us for our flagship fundraising challenge — a two-day kick scoot from Aston University in Birmingham to Sam’s hometown of Derby.
55 miles on kick scooters.
No battery power. No shortcuts. Just muscle power.
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.
Our 2024 Scootathon helped fund our £110,000 UK research collaboration.
📅Saturday 19 to Sunday 20 September 2026
As Featured on BBC East Midlands Today!
Limited places available. Scooters included in the registration fee.
BECOME A SPONSOR
SAM'S SCOOTATHON 2026
Sam's Scootathon raises vital funds for our work. We already have some incredible sponsors for 2026, and are now looking to partner with even more businesses who want to be part of something truly special.
The businesses already supporting Sam's Scootathon 2026.
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. She visited him in hospital, 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 animal assisted therapy programme is a paid service, with some funded places. It generates vital income to support our core work across research, awareness and family support.
We deliver interventions across schools and organisations in Derbyshire and surrounding areas, including specialist settings.
The service is led by Tara Pegley-Stanger, an experienced and highly respected teacher from Derby, who is passionate about the positive impact animals can have on children.
Sam & Daisy
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Daisy
Tara & Daisy
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Daisy at School
BECOME A CHARITY PARTNER
We have some incredible charity partners. We are deeply appreciative for their support. They power what we do - from funding vital research, to raising awareness, to supporting families through the unimaginable.
We work closely with our partners, giving them the opportunity to see the real difference their support makes — and to share in the stories of the families they help.
If your business or organisation would like to partner with us, we'd love to hear from you.
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 facing the unimaginable
Every donation helps us move faster towards greater understanding, more effective treatments, and better support for families facing NORSE and FIRES.
These catastrophic conditions change lives in an instant. A leading UK neurologist describes them as "the most devastating conditions they have ever had to treat".
Your support gives families and clinicians real hope.
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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A MOTHER'S DIARY...
