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OUR WORK
At Sam’s Superheroes Foundation, our mission is to improve the lives of those affected by NORSE and FIRES. We are the UK's only charity dedicated to these extremely rare and life-changing epilepsies. Families face them without warning, and frequently with limited support. Our work centres on three core pillars:
Research: driving the progress urgently needed across the UK.
Awareness: ensuring NORSE and FIRES are recognised and understood.
Family Support: standing beside families through both the acute stage and the long-term journey.
Together, we are building a future where families feel supported, research is prioritised, and these devastating conditions are met with understanding and compassion.
We fund, support, and advocate for UK-led research into NORSE and FIRES working with families, clinicians, and researchers to accelerate treatments and move closer to a cure.
Research into NORSE and FIRES is urgently needed. Because these conditions are so rare, progress has historically been slow and fragmented, and without dedicated funding and advocacy, that won't change.
Sam's Superheroes Foundation raises funds for and directly funds UK-led research that reflects the realities of families and the NHS. From co-funding a national PhD studentship to fostering collaboration between leading clinicians, researchers, and families, we are building the evidence base that will shape future care.
Our goal: earlier recognition, better treatments, and ultimately a cure.
We raise awareness of NORSE and FIRES, ensuring these conditions get the recognition they need to drive research, secure funding, and change outcomes.
Awareness is essential. It brings clinicians, researchers and families together, drives research up the agenda, and helps schools, GPs and community services understand that NORSE and FIRES are not simply epilepsy or acquired brain injury, but complex conditions with significant long-term impacts.
Through campaigns, lived experience, speaking events and clinical collaboration, we are ensuring NORSE and FIRES are recognised, understood, and met with compassion.
Our goal: a world where no family faces these conditions alone.
We provide practical and emotional support to families facing NORSE and FIRES, at every stage of the journey.
Our support is rooted in lived experience and an understanding of both the acute crisis and the long-term realities survivors face. We offer grants for urgent needs, clear and accessible guidance, one-to-one support, and peer connection with families who truly understand.
Because NORSE and FIRES can lead to profound and ongoing neurological, cognitive, emotional and behavioural impacts, we know that families often need sustained support long after hospital discharge. We are developing our support model to incorporate specialist counselling and clinically informed guidance, so families receive consistent, high-quality help throughout.
Our goal: practical support, genuine understanding, and no family left to navigate this alone.
Are you a family affected by NORSE or FIRES? We are here to help.
Contact us at rachel@samssuperheroes.co.uk
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RESEARCH MILESTONE
ACHIEVED!
Despite the severity of FIRES, it remains vastly under-funded and under-researched. This lack of evidence leaves families in the dark, fighting for answers and struggling to access treatments that could improve their loved ones’ lives.
That is why we are so incredibly proud to have reached our £50,000 research commitment on Christmas Day 2025, forming part of a £110,000 UK research collaboration with the Epilepsy Research Institute to advance UK-led research into NORSE and FIRES.
The research application process is now underway, and we hope to see the study begin in Autumn 2026. Click here to learn more about this collaboration.
A heartfelt thank you to every individual, school, business and organisation who made this possible — including the many young people, some of whom were Sam’s friends, whose kindness, energy and determination helped us reach this milestone.
This achievement stands as a powerful reminder of what can happen when families, communities, clinicians and researchers unite with a shared purpose: to change the future for those affected by NORSE and FIRES.
DAISY THE THERAPY DOG
Daisy isn’t just a therapy dog — she was Sam’s beloved black Labrador. She stayed by his side during his days in critical care, bringing comfort to your family when you needed it most. That moment unknowingly began her therapy journey.
Today, Daisy carries Sam’s legacy forward.
Working alongside Tara, our experienced Early Years practitioner, Daisy is at the heart of our Therapy Dog programme, supporting children facing emotional, mental and physical health challenges. With her gentle nature and wagging tail, she eases anxiety, builds confidence and brings light to tough days.
Our programme now supports around 60 children every week across six schools. Daisy’s presence also helps raise vital awareness of NORSE and FIRES in communities we may never otherwise reach.
The Therapy Dog programme is fully self-sustaining — a paid-for service delivered by Tara and Daisy that funds itself and contributes to the wider work of Sam’s Superheroes. Funded sessions are available so no school or child misses out due to cost.
For more information, please contact:
CREATIVE THERAPY PROGRAMME
We believe in the power of creativity to help children and families heal. That’s why we fund creative tool kits for children receiving care at Blackpool Victoria Hospital, where Sam’s extended family live.
The project is led by Sam’s Aunty Rhi, and is self-funded through money raised in Blackpool, and it also helps raise essential awareness of our charity within the local community.
These tool kits are designed to support children who are struggling with their mental or emotional wellbeing in hospital. They encourage expression, connection and resilience through creativity - offering a safe outlet during frightening or overwhelming moments.
We’ve seen firsthand how something as simple as a creative activity can become a lifeline for children navigating hospital stays: helping them cope, feel empowered, and stay connected to themselves and the people who love them.
For more information, please contact:
📧 Rhi@samssuperheroes.co.uk
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