BE A HERO
Sam’s Superheroes Foundation is the UK’s only charity dedicated to NORSE and FIRES - rare and catastrophic epilepsy syndromes that strike without warning in previously healthy children and adults, often following a mild illness. They are thought to be immune-driven, making them fundamentally different from typical epilepsies, and outcomes can be devastating.
Our mission is to fund, support, and advocate for UK-led research, while providing vital support to families. By working in partnership with clinicians, researchers, and epilepsy organisations worldwide, we aim to improve understanding, accelerate treatments, and ultimately find a cure.
FOR KIDS LIKE SAM
ABOUT NORSE and FIRES
NORSE (New-Onset Refractory Status Epilepticus) and FIRES (Febrile Infection-Related Epilepsy Syndrome) are rare, catastrophic, epilepsy syndromes. They cause the sudden onset of non stop seizures in previously healthy children and adults, with no clear underlying cause.
Seizures rapidly escalate over hours to days into relentless, life-threatening, non-stop seizure activity that is extremely difficult to control. There is currently no cure.
Urgent admittance to critical care is essential. Many people require weeks or months in a medically induced coma, alongside multiple anti-seizure medications, and immunotherapies in an attempt to stop the seizures and protect the brain. Prolonged, uncontrolled seizures can cause brain injury and swelling, making rapid seizure control critical.
Outcomes are often devastating. Around one in five people do not survive the acute phase, and many survivors are left with significant neurological disability and drug-resistant epilepsy.
Growing evidence suggests immune dysregulation and neuroinflammation play a central role in NORSE and FIRES. Seizures often begin after a seemingly mild viral illness (such as a cold, flu, or stomach bug) - symptoms so common that no one could reasonably predict or prevent what follows.
FIRES is a subtype of NORSE, most commonly affecting children (though adults can be affected). It is diagnosed when a febrile illness occurs 24 hours to two weeks before the onset of seizures.
We need to stop NORSE and FIRES from devastating lives. Urgent research is needed to improve understanding, identify more effective treatments, and ultimately - find a cure.
OUR SERVICES
Research and Advocacy: We fund, support, and advocate for UK-led research into NORSE and FIRES. We work in close collaboration with families, clinicians, researchers, and epilepsy organisations in the UK and internationally to deepen understanding, accelerate new treatments, and ultimately find a cure.
Family Support: We support people and families affected by NORSE and FIRES by providing practical help at every stage of the journey. This includes small grants, peer support, and signposting to specialist services, helping families navigate hospital stays, rehabilitation, and life after discharge.
Children's Wellbeing: We support children’s emotional wellbeing by funding animal-assisted and creative therapies. We even have our own Therapy Dog - a superhero black Labrador called Daisy 🐾You can learn more about Daisy and her work here here.
SAM'S STORY
Sam is the much loved five-year-old son of our Founder and Trustee Rachel, from Derby in the UK. He was loving, incredibly kind, and wise beyond his years. Sam adored the simple things of life - the outdoors, LEGO, monster trucks, his black labrador Daisy and all things superhero. He brought joy, love and light to everyone around him.
In March 2021, aged just five years old, Sam’s family’s world fell apart when he suddenly became critically ill following what appeared to be a simple viral infection. Sam had no history of epilepsy and no underlying health conditions when he was struck by FIRES (Febrile Infection-Related Epilepsy Syndrome) - a rare and devastating epilepsy syndrome that triggers relentless, explosive seizures. FIRES is very rare, and there is currently no cure.
Despite spending seven weeks in a medically induced coma at Queen’s Medical Centre in Nottingham, undergoing intensive treatments and fighting with extraordinary courage, Sam tragically passed away in his parents’ arms on 8 May 2021. He died from catastrophic and irreversible brain damage caused by continuous, uncontrolled seizures.
Losing Sam shattered his family’s world, leaving a depth of grief and heartbreak that no words can fully describe.
To honour Sam’s life and legacy, his mum Rachel founded Sam’s Superheroes Foundation, determined to help prevent other families from facing the devastation of NORSE and FIRES.
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A £110,000 RESEARCH COLLABORATION!
We have Hit a
Major Milestone!
We are incredibly proud to have reached our £50,000 research commitment, forming part of a £110,000 UK research collaboration with the Epilepsy Research Institute to support UK-led research into NORSE and FIRES. The research application process is underway, and we hope to see the study begin in Autumn 2026.
This phenomenal achievement represents the dedication, generosity, and belief of our supporters - and it has enabled us to play a meaningful role in advancing vital research into these devastating conditions.
A huge thank you to every individual, business, and organisation who has supported us - including the many schools and young people, some of whom were Sam’s friends, whose kindness, energy, and determination helped us reach this incredible milestone.
Reaching this milestone is something we never imagined possible when Sam died. It stands as a powerful testament to what can be achieved when families, communities, clinicians, and researchers come together with a shared purpose.
HEROES ASSEMBLE!
The Work Continues!
We must keep our fundraising going! NORSE and FIRES remain poorly understood, with no clear cause, no consistently effective treatments, and currently no known cure. While growing evidence suggests that immune dysregulation and neuroinflammation play a major role, research is still in its early stages. Much more work is needed to deepen understanding, develop better treatments, and improve outcomes for families facing this today.
That’s why our fundraising does not stop at £50,000. Ongoing fundraising is essential to sustain research, accelerate progress, improve awareness, improve family support and ensure that families are not left without answers or hope.
Join Our Mission
We invite you to continue this journey with us. Every donation, event, and act of support helps move research forward and brings us closer to a future where NORSE and FIRES no longer devastate lives.
Sam’s Big Scoot 2026
Join Sam’s Big Scoot 2026 — our flagship fundraising challenge in Sam’s memory. This 55-mile, two-day kick scoot travels from Aston University in Birmingham to Sam’s hometown of Derby, taking in city streets, countryside, and an overnight stop in Burton upon Trent.
With no electric scooters, just determination and teamwork, it’s an exhilarating, highly visible challenge - stopping along the way to raise awareness, share Sam’s story, and spark conversations in communities we pass through.
Our last scoot attracted fantastic media coverage - we even featured on BBC East Midlands Today!
If you’re interested in taking part or would like to learn more about business sponsorship opportunities, we’d love to hear from you. Drop us a message to get involved or call/text us on 07880 343416.
HELP us FIGHT
NORSE and FIRES
Your donation will help us power UK research, strengthen global collaboration and improve treatments, so that one day, we will find a cure for NORSE and FIRES.
It will also support UK families facing the unimaginable - NORSE and FIRES, and help us fund our animal-assisted and creative therapies programmes providing children with comfort and joy when they need it most.
Every donation matters. One-off, monthly, or a fundraising challenge - it all makes a huge difference.
Join us in honouring our loved ones lost to NORSE and FIRES. Together, we can save and change lives.
MEET DAISY THE SUPER THERAPY DOG
Daisy is more than just a therapy dog, she is actually Sam’s beloved black labrador. They were joined at the hip. She visited Sam when he was in critical care and brought Sam’s entire family immense comfort.
Daisy is now the star of our charity; a source of comfort, joy, and healing for children facing mental and emotional health challenges. With her wagging tail and gentle nature, Daisy has a special way of making children smile, easing anxiety, and bringing warmth to tough days.
Whether she’s supporting children in our Therapy Dog programme or lending a paw of support during difficult times, Daisy embodies the love and hope that Sam’s Superheroes Foundation stands for.
Fun Fact: Daisy loves belly rubs and is an expert at cheering people up with her playful spirit!
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