BE A HERO
Sam’s Superheroes Foundation is a mum-founded charity dedicated to improving outcomes for people affected by the RARE EPILEPSIES NORSE and FIRES.
Very different from typical epilepsy, these catastrophic conditions begin suddenly in previously healthy children and adults with no seizure history, often following a mild virus. They cause explosive, non-stop seizures that are difficult, and often impossible, to stop. With no cure and no clear cause, outcomes are frequently devastating.
Alongside our research, awareness and family support work, we run a therapy-dog service for young people and provide creative therapy packs to children in hospital to bring comfort, calm and connection during a scary and frightening time.
FOR KIDS LIKE SAM
OUR STORY
A beautiful five-year-old boy called Sam is the reason our charity exists.
Sam is the much loved 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, just a few weeks after Sam's fifth birthday, his family’s world fell apart when he suddenly became critically ill following what appeared to be a simple virus. Sam had no history of epilepsy and no underlying health conditions when he was suddenly struck by FIRES (Febrile Infection Related Epilepsy Syndrome), a rare and devastating epilepsy. It appears out of nowhere, unleashing relentless, explosive seizures that are extremely difficult to control - and sometimes impossible to stop.
Despite spending seven weeks in a medically induced coma at Nottingham QMC undergoing intensive and invasive treatments, Sam's seizures could not be stopped and he tragically passed away in his parents’ arms on 8 May 2021. Sam died from catastrophic and irreversible brain damage caused by his continuous, non stop seizures.
Losing Sam shattered his family’s world, leaving a depth of grief, heartbreak and loss that no words can ever fully describe.
To honour her beautiful son’s life and legacy, his mum founded Sam’s Superheroes Foundation - the only UK charity dedicated to the catastrophic epilepsies NORSE and FIRES - determined to help prevent other families from facing such devastation.
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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. Non-stop, uncontrolled seizures can damage the brain and cause it to swell, making rapid seizure control critical.
Outcomes are often devastating. Around one in five people do not survive the initial 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, working 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 also support children’s mental 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.
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A £110,000 RESEARCH COLLABORATION!
A milestone powered by love, community, and hope
2025 marked the greatest achievement since Sam’s Superheroes Foundation was created.
In July, we announced our first-ever research partnership with the Epilepsy Research Institute, committing to co-fund a £110,000 UK rare epilepsy research project into NORSE and FIRES. Our initial goal was £50,000, but this collaboration took it to new heights. The research application process is now underway, and we hope to see the study begin in Autumn 2026. Learn more about this partnership by clicking here.
Rosemarie Pardington, Chief Executive of the Epilepsy Research Institute, said:
Our £50,000 research commitment was reached on Christmas Day, thanks to an incredibly generous £4,000 donation from Derbyshire Contracting Services Ltd - a Christmas gift to Sam.
For us, funding this research was a true pinch-us moment. It is driven by love for Sam - the little boy at the heart of our charity - and by hope for every child and family facing NORSE and FIRES today, and in the future.
A huge thank you to every individual, business, and organisation who has supported us. This includes the many schools and young people, some of whom were Sam’s friends, whose kindness, energy, and determination helped us reach this incredible milestone.
"By investing in talented researchers, we’re taking an important step forward in providing answers for families and improving outcomes for those affected. This partnership shows the power of community-driven funding to accelerate scientific progress — and we hope it will help discover the next research superhero, in Sam’s memory."
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The Work Continues!
FUNDRAISING HEROES NEEDED!
People support Sam’s Superheroes in so many amazing ways - from cake bakes and fun runs to once-in-a-lifetime challenges. Children, adults, schools, workplaces, community groups… everyone plays a part.
Ongoing fundraising is essential to sustain research, accelerate progress, improve awareness, strengthen family support, and ensure families are never left without answers or hope.
Sam’s Big Scoot 2026
This two-day, 55-mile KICK SCOOT takes you from Aston University in Birmingham to Sam’s hometown of Derby — no electric scooters, just determination, teamwork, and community spirit.
Along the way, we raise awareness, share Sam’s story, and spark conversations in every community we pass through.
The event takes place Saturday 19 to Sunday 20 September 2026. No experience is needed - entry options can include kick-scooter hire, and we promise that once you try kick-scooting, you’ll love it!
Individuals, friendship groups, and company teams are all welcome - it’s a brilliant team-building challenge with huge impact!
Our last Scoot even featured on BBC East Midlands Today!
If you're interested in taking part or exploring business sponsorship, we’d love to hear from you. Message us or call/text 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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