.png)
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.
RESEARCH
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, improve survival - ultimately moving closer to a cure.
Research into NORSE and FIRES is urgently needed — not only to understand why these conditions happen, but to improve treatments, pathways of care, and long-term outcomes for those affected. Because these conditions are so rare, research has historically been limited, fragmented, and often based on very small datasets.
At Sam’s Superheroes Foundation, we are are working collaboratively to help change that by championing and funding UK-led research that reflects the realities of families here in the UK and across the NHS. From co-funding a national PhD studentship to investigate NORSE and FIRES through to advocating and supporting collaboration between leading clinicians, researchers, and families, we are committed to building evidence that will shape future care.
Our work moves us closer to earlier recognition, better treatments, and deeper understanding - providing hope for families today and for generations to come.
AWARENESS
Awareness of NORSE and FIRES is the foundation of our work at Sam’s Superheroes Foundation. These conditions are extremely rare and still relatively newly recognised, meaning many families - and many professionals across the NHS - may never have encountered them before a crisis unfolds. This can leave families facing the most frightening moment of their lives without information or context.
Stronger awareness is essential. It drives research up the agenda, brings clinicians, researchers and families together, and helps secure the funding needed for UK-led progress. It also helps schools, GPs and community services understand that NORSE and FIRES are not “just epilepsy” or “just acquired brain injury”, but complex conditions that can leave survivors with significant long-term neurological, emotional and behavioural impacts and at high risk of regression and difficult to control seizures.
Crucially, awareness finally gives families a voice. For too long, parents and survivors have suffered the trauma of these conditions in silence - unheard, unseen, and without a place to share their experiences. Awareness creates space for their stories, validates their journeys, and ensures that what they have endured is recognised and not ignored.
Through campaigns, lived experience, speaking events and clinical collaboration, we are working to ensure NORSE and FIRES are recognised, understood, and met with compassion.
FAMILY SUPPORT
Families facing NORSE or FIRES step into a world they never expected - one filled with fear, uncertainty, and life-changing decisions.
At Sam’s Superheroes Foundation, we ensure no family walks that journey alone. Our support is rooted in lived experience, compassion, and an understanding of both the acute crisis and the long-term realities survivors face.
We provide emotional and practical help at every stage: grants for urgent needs, clear and accessible guidance, one-to-one support, peer connection, and a safe space for families to share their stories. We know that NORSE and FIRES can lead to profound and ongoing neurological, cognitive, emotional and behavioural impacts, and families often need sustained support long after hospital discharge.
We are also developing our family support model to incorporate professional expertise - working towards integrating specialist counselling, support and clinical-informed guidance, so families receive consistent, high-quality support throughout both the acute and chronic stages.
Every part of our evolving support offer is shaped by what families tell us they need most: understanding, continuity, and someone who truly “gets it”. We stand beside them - in the hardest moments, through the uncertainty, and throughout the rebuilding that follows.
GRANTS FOR FAMILIES AFFECTED BY NORSE and FIRES
Caring for a child with FIRES can bring unexpected financial challenges. Our Sam’s Superheroes Family Grants offer up to £500 to support families navigating life with this devastating condition. Whether it’s funding essential medical equipment, therapy sessions, travel expenses for hospital stays, or specialist support, our goal is to ease the burden—so families can focus on what truly matters: caring for their child.
How We Can Help
-
Special Days Out: Covering the cost of trips to places like the seaside, theme parks, or the theatre, giving families a chance to make cherished memories together.
-
Tailored Experiences: Arranging visits from entertainers or specialists, whether at home or in hospital, to bring joy to children in both the acute and chronic stages of FIRES.
-
Family Breaks & Holidays: Contributing towards a short break or holiday within the UK, offering families much-needed respite in the countryside or by the sea.
-
Specialist Equipment: Funding essential items that improve quality of life, such as wheelchairs, monitoring equipment, sensory tools, hoists, and feeding tubes.
-
Hospital Stay Support: Helping with the financial strain of having a child in intensive care, covering travel, accommodation, and practical costs.
How to Apply
If you’re under 25 and living in England or Wales, and FIRES has impacted your life, we encourage you to apply for support. Our application process is simple, and we review requests on a rolling basis to ensure families facing urgent needs receive help as quickly as possible.
Grants are awarded at the discretion of our Trustees, in line with the charitable purposes and objectives of Sam’s Superheroes Foundation.
For more information, please contact:
.png)
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.
DOG THERAPY IN ACTION!
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:
BOOK A DOG THERAPY VISIT IN DERBY
If you are interested in booking a visit from Daisy our therapy dog, for your school, or organisation, or would like to learn more 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
.jpg)