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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 registered charity dedicated to these extremely rare and life-changing neurological conditions. They strike without warning, leaving families facing the unimaginable — often with little support and suffering in silence.
Our work focuses on three core pillars:
Research: We fund and advocate for UK-led research to accelerate understanding, improve treatments, and move closer to a cure. Our community has already helped fund a £110,000 UK research collaboration — a vital step forward.
Awareness: We raise awareness of NORSE and FIRES, give families a voice and are building a UK-wide community of families, clinicians, researchers, and supporters - so no one feels alone and these conditions are recognised and understood.
Family Support: We stand beside families through both the acute stage and the long-term journey, ensuring no one faces this alone and has the right support.
Together, we are building a future where families feel supported, research is prioritised, and these devastating conditions are met with understanding and compassion — and, above all, families can begin to feel hope.
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. These conditions are not only extremely rare, but also relatively newly recognised — meaning research has been limited and significant gaps in understanding remain. Without dedicated funding and advocacy, that won't change.
At Sam's Superheroes Foundation we support and fund UK-led research that reflects the realities of UK families and our healthcare system. We help bring families, clinicians and researchers together — ensuring lived experience is heard and encouraging collaboration to strengthen understanding of these conditions.
From co-funding a national PhD studentship to supporting collaboration between clinicians, researchers and families, we are contributing to the growing evidence base that will help 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 OUR THERAPY DOG
Daisy isn’t just a therapy dog — she was Sam’s beloved black Labrador. She was by his side during his days in critical care, bringing comfort when it was needed most. That was the beginning of her therapy dog journey.
Today, Daisy carries Sam's legacy forward, guided by Tara Pegley-Stanger, who leads our animal assisted therapy programme. Tara is passionate about how animals can support children.
Daisy supports young people facing emotional, mental and physical health challenges - easing anxiety, building confidence, helping regulate and bringing light to difficult days.
Key Stats
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Supporting around 60 children every week
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Across 7 schools
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Through 1:1 and group sessions
Awareness
Daisy is also our charity ambassador. She helps raise vital awareness of NORSE and FIRES in communities we may never otherwise reach.
Sustainability
Our therapy dog programme is fully self-sustaining — a paid service that funds itself whilse also supporting the wider work of Sam's Superheroes Foundation. We also offer some funded sessions, helping more children access support where its needed most.
Contact
CREATIVE THERAPY PROGRAMME
One of the ways we raise awareness of NORSE and FIRES is through gifting creative therapy packs to the children's wards at hospital at Blackpool teaching hospital. We work closely with the play therapists and nursing teams to ensure our packs contain carefully chosen items to support children in hospital.
This programme is led by Sam’s aunty and is self-funded through money raised locally in Blackpool — specifically for this purpose. It is a powerful way of raising awareness of NORSE and FIRES in communities we may not otherwise reach.
These creative therapy packs 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 support and care during frightening or overwhelming moments.
We’ve seen firsthand how something as simple as a creative activity can become a lifeline for children — helping them cope, feel empowered, and stay connected to themselves and the people who love them.
We are incredibly grateful to the local businesses, organisations and individuals who sponsor our packs — your support makes this vital programme possible.
Want to get involved?
Sponsor a pack, donate items, support via our Amazon Wish List, or even fundraise — we'd love to have you involved!
Contact
📧 Rhi@samssuperheroes.co.uk
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