BE A HERO
Sam’s Superheroes Foundation is the UK’s only charity dedicated to NORSE and FIRES - rare, life-threatening epilepsies. They strike suddenly in previously healthy children and adults, often after a mild illness. Around one in five do not survive the acute stage, and many survivors live with significant neurological disability. There is currently no cure.
​​​​
Our mission is to bring hope to those affected by NORSE and FIRES by funding, supporting, and advocating for UK-led research. We collaborate with families, clinicians, researchers, and epilepsy organisations worldwide to deepen understanding, accelerate new treatments, and ultimately find a cure - while providing support to families across the UK.
FOR KIDS LIKE SAM
ABOUT NORSE and FIRES
NORSE (New-Onset Refractory Status Epilepticus) and
FIRES (Febrile Infection-Related Epilepsy Syndrome) are catastrophic, rare epilepsies. They cause the sudden onset of seizures in previously healthy children and adults, with no clear underlying cause.
​
Seizures escalate rapidly 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 a critical care unit is essential. Many people require weeks to months in a medically induced coma, together with multiple anti-seizure medicines, and immunotherapies to try and stop the seizures and protect the brain. Uncontrolled seizures can injure the brain and cause swelling, so rapid seizure control is critical.
​​
Outcomes are often devastating. Around 1 in 5 people do not survive the acute phase. Survivors frequently live with significant neurological disability and drug-resistant epilepsy.
​​
What might trigger them? Growing evidence suggests immune dysregulation and neuroinflammation play a major role. Often, seizures 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.​
​
How do NORSE and FIRES relate? FIRES is a subtype of NORSE, usually affecting children (though adults can be affected). It’s classified as FIRES when a febrile illness occurs 24 hours to 2 weeks before seizures begin.
​​​​​
We need to stop NORSE and FIRES from devastating lives. More research is urgently needed to help improve our understanding, identify better treatments, and one day - find a cure.
OUR SERVICES
We fund, support, and advocate for UK-led research into NORSE and FIRES, collaborating with families, clinicians, researchers, and epilepsy organisations worldwide to deepen understanding, accelerate new treatments, and ultimately find a cure.
​​​
We support families facing NORSE and FIRES through practical help and small grants to help them navigate hospital, rehab, education and life after discharge.
​​​
We support children’s wellbeing through funding animal-assisted and creative therapies, bringing moments of joy when it's needed the most. We even have our own Therapy Dog, a superhero black Labrador Dog called Daisy! Read more about Daisy here.​
CHILDREN'S WELLBEING
We fund animal-assisted therapy which can include the use of dogs, horses, rabbits, guinea pigs, reptiles or even those with eight legs, and even have our own Therapy Dog, Daisy!
​​We also fund creative toolkits for children in hospital!
SAM'S STORY
Sam was a much loved, beautiful, and loving five-year-old boy, from Derby in the UK. He loved the outdoors, Lego, all things superhero, and his beloved dog, Daisy. Sam was incredibly kind, wise beyond his years and loved life. He brought joy and light to everyone around him.
​​​​​​​
In March 2021, aged just five years old, Sam fell critically ill following what seemed like a simple virus. Sam had no history of epilepsy, or any underlying conditions, when he was suddenly struck by FIRES (Febrile Infection Related Epilepsy Syndrome) - a rare and devastating type of epilepsy that triggered relentless, explosive seizures. FIRES is believed to affect just one in a million children. There is currently no cure.​​​
Despite spending seven weeks in a medically induced coma at Queens Medical Centre, Nottingham undergoing intensive treatments, and showing extraordinary fight, Sam tragically passed away in his parent's arms on 8th May 2021. He died from catastrophic and irreversible brain damage caused by the continuous seizures. To read more about Sam's story click on the button below.
​​​​​
To honour Sam’s life, his mum Rachel founded Sam’s Superheroes Foundation, determined to try and spare other families from facing the devastation of NORSE and FIRES.
.jpg)
HEROES ASSEMBLE!
Join our Mission to Raise £50,000!
NORSE and FIRES, remain poorly understood, with no clear cause, no effective treatments, and currently - no known cure. Whilst growing evidence suggests immune dysregulation and neuroinflammation play a major role research is only just beginning to uncover understanding.
​​​​
Funding medical research is the key to unlocking answers and find a cure, and the UK needs to be be at the heart of it. Without research, NORSE and FIRES will continue to steal the lives of innocent healthy children and adults.
​​​​​​
We’re currently raising £50,000 to co-fund a £110,000 UK research collaboration with the Epilepsy Research Institute - to help discover answers for NORSE and FIRES. This will be one of very few UK studies focused on these rare epilepsies.
​​​​
Every donation, no matter how big or small, takes us a step closer to understanding these catastrophic epilepsies, discovering better treatments, and ultimately finding a cure.
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 real 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!
.jpg)
_JPG.jpg)
Sign up to our Newsletter
OUR LATEST NEWS
.png)