BE A HERO.
Sam’s Superheroes Foundation was born from lived experience. We are the UK's only registered charity dedicated to supporting those affected by NORSE and FIRES.
For families facing NORSE and FIRES.
We fund research, raise awareness, and support families facing the unimaginable.
NORSE and FIRES are rare neurological conditions that cause sudden, 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 — and unimaginable heartbreak for his family.
After experiencing first-hand how little understanding and awareness there was of NORSE and FIRES — and how little dedicated support existed for families in the UK — Sam's mum, Rachel, founded Sam's Superheroes Foundation.
Today, Sam's charity works to improve outcomes for people affected by NORSE and FIRES through research, awareness and family support.
For Sam. For every family.
_edited.jpg)
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.
-
Around 1 in 5 people do not survive
-
There is currently no cure
-
The underlying cause is poorly understood
-
Recovery is possible, but survivors can be left with lifelong neurological disability, chronic epilepsy, and complex long-term care needs
REAL FAMILIES and REAL STORIES
NORSE and FIRES are rare, but each year they strike previously healthy children and adults completely without warning. 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 families affected by NORSE and FIRES across the UK.
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 people 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
_JPG.jpg)
Daisy
Tara & Daisy
.jpg)
Daisy at School
BECOME OUR CHARITY PARTNER
Our charity partners help power our work. 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 supporting us in our vital work.
£110,000 NORSE & FIRES Pioneering Research Project - Starting 2026
In partnership with the Epilepsy Research Institute, our first £110,000 NORSE and FIRES research collaboration has now been formally approved and included within the Institute’s national research portfolio for 2026/27.
This is only the second dedicated UK research project focused specifically on NORSE and FIRES in the UK.
Leading this study are Dr Marios Kaliakatsos and Professor Torsten Baldeweg, researchers at UCL Great Ormond Street Institute of Child Health.
The research aims to answer some of the most important questions facing families affected by NORSE & FIRES.
-
Why do some people recover better than others?
-
Can we identify early signs that help predict recovery and long-term outcomes?
-
How can this knowledge help clinicians make earlier, more personlaised treatment decisions?
-
Ultimately, how can we improve care, support and quality of life for survivors and their families?
Watch the short video below to hear directly from Dr Marios Kaliakatsos, Professor Torsten Baldeweg, and Sam's mum about this pioneering research project and what it could mean for families affected by NORSE and FIRES.
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 was the first time NORSE and FIRES had been discussed in any Parliament in the world.
For families who have suffered in silence for far too long, this was a historic moment and an important step towards greater awareness, recognition and understanding of NORSE and FIRES among Government, healthcare professionals and the public.
Watch the short video below.
SAM'S 55 MILE
SCOOTATHON
2026 Registration Open!
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. 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.
📅Saturday 19 to Sunday 20 September 2026
📍Our 2024 Scootathon helped fund our £110,000 NORSE & FIRES research study
📺Featured on BBC East Midlands Today
Register now. Limited places.
Scooters included in £45 registration fee.
And, this is what you could be a part of!
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.
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 & FIRES.
These catastrophic conditions change lives in an instant with a a leading UK neurologist describing 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
.png)
A MOTHER'S DIARY...
