BE A HERO.
Sam’s Superheroes Foundation was born from lived experience. We are the UK's only registered charity dedicated to supporting families affected by the rare and devastating epilepsy syndromes NORSE and FIRES.
For families facing NORSE and FIRES.
We fund vital research, raise awareness, and support families facing the unimaginable.
They cause the sudden onset of relentless, life-threatening seizures in previously healthy children and adults.
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.
After experiencing first-hand how little understanding and awareness there was of NORSE and FIRE — and how little dedicated support existed for families in the UK — his mum, Rachel, founded Sam's Superheroes Foundation.
Today, the charity works to improve outcomes for people affected by NORSE and FIRES through research, awareness and family support.
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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Recovery is possible, but survivors can be left with lifelong neurological disability, chronic epilepsy, and complex long-term care needs.
REAL PEOPLE and REAL STORIES
NORSE and FIRES are rare, but children and adults across the UK are affected every year. Their catastrophic impact is very real — lives can change in an instant.
Behind every diagnosis is a person, a family, and a story. These stories matter, and deserve to be seen and heard.
Here are just some of the lives affected across the UK.
Tap each photo to read more.
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 family support.
NORSE & FIRES RAISED IN UK PARLIAMENT
In April 2026, NORSE and FIRES were raised in UK Parliament for the first time when Samantha Niblett MP spoke in the House of Commons on behalf of Sam's Superheroes Foundation and families affected by these devastating neurological conditions.
This is the first time NORSE and FIRES had been raised in UK Parliament — and, to our knowledge, in any Parliament around the world.
For families who have suffered in silence for far too long, this was a landmark moment.
This is only the beginning.
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.
SAM'S
2026 Registration Open!
SCOOTATHON
Sam's Scootathon is back for 2026! Join 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.
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 backing Sam's Scootathon 2026. Helping fund awareness, family support and vital NORSE and FIRES research.
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 OUR CHARITY PARTNER
Our charity partners help power our work across the UK. From funding vital research and raising awareness, to supporting families through the most devastating time of their lives.
We work closely with them so they can see the real difference their support makes.
If you would like to partner with us, or support us in any way, 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. Helping us fund awareness, family support and vital NORSE and FIRES research.
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...
