We’re Proud to Announce our Partnership with the Epilepsy Research Institute
- Aug 18, 2025
- 3 min read
Updated: May 30
We’re thrilled to share some huge news!
Sam’s Superheroes Foundation has officially partnered with the Epilepsy Research Institute to co-fund vital research into NORSE and its subtype FIRES, the rare and devastating epilepsy that took the life of our Founder's five year old son, Sam.
This partnership means our original fundraising goal of £50,000 has more than doubled - bringing the total research investment to £110,000.
This is an incredible leap forward in our mission to help researchers find answers, improve outcomes, and provide hope for families facing the unimaginable.
We are incredibly grateful to the Epilepsy Research Institute for this research partnership.
About The Epilepsy Research Institute
The Epilepsy Research Institute serves as the central hub for the epilepsy research community.
Their goal is simple but powerful: to bring people together and make sure the right research gets the support it needs.
They connect universities, the NHS, charities, patient groups, funders, and even industry partners helping to build collaborations that can speed up progress.
Most importantly, they always put people living with epilepsy at the center of everything they do, making sure that research focuses on the questions and priorities that matter most to families.
Why This Partnership Matters
NORSE and FIRES cause the sudden onset of relentless, life-threatening seizures in previously healthy children and adults, that are difficult, sometimes impossible to stop.
Around 1 in 5 people do not survive.
There is currently no known cure.
The underlying cause remains poorly understood.
Recovery is possible, but survivors can frequently be left with lifelong neurological disability, chronic epilepsy and complex care needs.
Sam fell ill with FIRES on 22 March 2021 . He was healthy, had no underlying conditions, and had never had seizures before.
Sam spent 7 weeks in an induced coma in critical care, whilst doctors battled to stop his non-stop seizures. Sadly Sam's seizures could not be stopped and they caused catastrophic and irreversible brain damage in just 7 short weeks, and Sam's parents faced what no parent should ever have to face - as his life support was withdrawn.
Our mission has always been to prevent other families from facing the same devastation and heartbreak.
This partnership will allow researchers to apply for grants to study NORSE and its subtype FIRES. It is hoped that the dedicated PhD research studentship will start towards the end of 2026.
Rosemarie Pardington, Chief Executive of the Epilepsy Research Institute, said:
“We are thrilled to partner with Sam’s Superheroes Foundation to fund this vital PhD studentship.
FIRES is a rare but devastating condition that can strike without warning. By investing in talented researchers, we’re taking an important step toward providing answers for families and, ultimately, improving outcomes for those affected.
“This collaboration is a testament to the power of community-driven funding to accelerate scientific progress, and we hope it will find the next research superhero in Sam's memory.”
Where we are now, and how you can help
So far, we’ve raised £35,000 towards our £50,000 pledge. Every pound we raise is match-funded by the Epilepsy Research Institute, which means every donation goes twice as far in powering life-changing research.
We’re calling on you, our whole community: businesses, schools, sports clubs, hotels, gyms, to help us reach the final £15,000. Whether it’s a cake sale, sponsored walk, quiz night, challenge event, or a one-off donation, every contribution makes a real difference.
This is more than a funding milestone. It’s scientists, families and communities working together to bring hope where there is none. And together, we can make sure Sam’s legacy is one of action, progress, and hope for every child and family affected by FIRES.
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