Campaign by 
Story
Sam Liew, from Derby in the UK, was five years old. Happy. Healthy. Full of life.
[Photo of Sam and his dog Daisy in 2020)
Then in March 2021 FIRES suddenly struck without warning. Sam had his very first seizure, which lasted 35 minutes.
It all began as a mild virus rapidly became a neurological emergency. Within hours, we were thrown into the world of intensive care and catastrophic seizures. Sam was placed into a medically induced coma just eight hours after his first seizure as doctors fought to bring them under control.
But his seizures were relentless, aggressive and extraordinarily difficult to stop. Sam suffered brain damage within just seven days.
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 existed 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.
Read more about Sam's story on our website click here
More about NORSE and 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.
Learn more on our website click here
Our Challenge
On 19–20 September 2026, Team Sam will take on an epic 55-mile kick-scoot from Birmingham to Derby for Sam’s Superheroes Foundation.
Over two days, we’ll scoot mile after mile in memory of Sam and for every person and family whose life has been changed by NORSE & FIRES — rare, catastrophic epilepsies that can strike without warning. Learn more on our website, click here
Sam’s Superheroes Foundation is the UK’s only registered charity dedicated to improving outcomes for people affected by NORSE & FIRES.
This challenge will be raising vital funds for our work of research, awareness and family support.
Why Your Support Matters
We know that fundraising like this can make a real difference.
Funds raised through our last Scootathon helped us co-fund a major £110,000 research collaboration with the Epilepsy Research Institute — only the second UK research study dedicated to NORSE & FIRES.
That research is an important step towards improving understanding of these devastating conditions and, ultimately, improving outcomes for the people affected by them. Read more here
Your support will help us continue to fund research, raise awareness and support families facing NORSE & FIRES.
Every donation, however large or small, helps us keep pushing for better understanding, better treatments and a better future for people affected by NORSE & FIRES.
55 miles. 2 days. One very important reason.
For Sam. For families. For hope. 💛
Please support Team Sam.