HOW IT ALL STARTED
Sam was five years old when FIRES took his life. A previously healthy, bright and joyful little boy, his illness was sudden, devastating and without warning.
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His mother Rachel, determined that Sam's life would leave a lasting mark, founded Sam's Superheroes Foundation in his memory. Now a registered charity, the Foundation exists to ensure no other family faces NORSE and FIRES without support, and that research into these conditions finally gets the attention and funding it deserves.
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Sam is at the heart of everything we do.
WHAT ARE NORSE & FIRES
New Onset Refractory Status Epilepticus (NORSE) and Febrile Infection Related Epilepsy Syndrome (FIRES) are rare, life-threatening neurological emergencies that cause the sudden onset of relentless, non-stop seizures, without a clear underlying cause.
​They most commonly affect children and young adults, and strike without warning in previously healthy people, often after something as simple as a mild illness. ​​
​Within hours or days, seizures escalate rapidly and become extremely difficult — sometimes impossible — to stop. Many patients spend weeks or months in intensive care, in medically induced comas as doctors fight to control the seizures and protect the brain from damage.
​​​THE IMPACT IS DEVASTATING.
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Around 1 in 5 people do not survive
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There is currently no cure
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The underlying cause is poorly understood
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While some recover, many survivors are left with lifelong neurological disability, chronic epilepsy, and complex long-term care needs.​​​​​​​​
MEET OUR FOUNDER:
Rachel Liew
As the driving force behind the charity, Rachel oversees its daily operations, funds and advocates for research, and works tirelessly to improve awareness and family support. She has built close collaborations with the NORSE Institute and the Epilepsy Research Institute, and serves as UK Country Lead and Ambassador for the NORSE Institute, contributing to their global mission to advance research and support families worldwide.
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Rachel works directly alongside the clinicians and researchers leading the UK's NORSE and FIRES research efforts, and has spoken at the NORSE Institute's International Conference, the Epilepsy Research Institute Reception in London, and the ERI Board and Scientific Advisory Committee dinner.
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She has shared Sam's story on BBC Radio Derby and in local and national publications.
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To book Rachel for speaking engagements: 07880 343416 | rachel@samssuperheroes.co.uk
Press and media enquiries:
Sarah Newton, Penguin PR | 01332 416228 | sarah@penguinPR.co.uk
MEET DAISY - OUR THERAPY DOG & CHARITY AMBASADOR
Daisy, our black Labrador, was Sam's beloved dog and constant companion. When Sam was in intensive care, her calm and loving presence brought comfort to everyone around her.
After Sam's passing, it felt only natural for Daisy to become part of his legacy.
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Today Daisy works alongside Rachel and Tara, supporting children in school around Derbyshire, including specialist settings. Through her gentle nature, she helps children feel calmer, more confident and more supported.
In 2024 she was highly commended at the BBC Radio Derby Make a Difference Awards, recognising her contribution to children's emotional and mental wellbeing. Her therapy dog work also played a key role in helping us achieve Lots for Tots - Charity of Year 2025.
🎥 Take a look at the video here to see why Daisy was nominated and just how special she is.​
OUR TRUSTEES
Our trustees are a passionate group of individuals, all driven by a commitment to making a difference. Each of us brings unique skills and experiences to the table, but we share one common goal: to honour Sam’s legacy by supporting families affected by FIRES and NORSE and pushing for research that could save lives.
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Our founder, Rachel Liew, is also a trustee, and leads the charity's work day-to-day work, driving its growth, partnerships and impact.
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Sarah Leroux – Chair
Emma Plummer - Vice Chair
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Millie Saunders – Deputy Safe Guarding Lead
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Sarah Newton – Media & Communications
Becky Sutton - Finance
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Rhiannon Jones – Safe Guarding Lead
NORSE Institute
The NORSE Institute is the world's leading organisation dedicated to NORSE and FIRES connecting doctors, researchers and families worldwide.
Rachel serves as UK Country Lead and Ambassador, helping ensure the voices and experiences of UK families are heard while contributing to their global mission.
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We have funded the redevelopment of the NORSE Institute website to strengthen UK and global awareness of NORSE and FIRES, including the development of UK content and country-specific pages, starting with the UK.
We are already seeing the impact of this work — with our charity featured on the NORSE Institute website and families finding and connecting with us.
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We are also on the Family Advisory Board for the international POCRI research study — a £15 million research programme comparing two drugs for the treatment of NORSE.
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Epilepsy Research Institute
We are proud to be co-funding a national PhD studentship with the Epilepsy Research Institute, dedicated to investigating NORSE and FIRES in the UK. This is a landmark piece of work that will help build the evidence base needed to improve diagnosis, treatment and outcomes for those affected.
PROUD TO BE A LOTS FOR TOTS 2025 AWARD WINNER
In 2025, Sam's Superheroes Foundation was honoured to receive the Lots of Tots Charity of the Year Award, recognising our work supporting families affected by NORSE and FIRES through research, awareness and family support.
From driving vital research and raising awareness, to our therapy dog programme led by Daisy, this award reflects the collective impact of everything we do — and belongs to every family we have had the privilege to support.