We’re proud to announce our partnership with the Epilepsy Research Institute
- rachel9754
- Aug 18
- 2 min read
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 FIRES (Febrile Infection Related Epilepsy Syndrome), the rare and devastating condition that took Sam’s life.
This partnership means our original fundraising goal of £50,000 has been more than doubled, bringing the total investment in FIRES research to £110,000. It’s an incredible leap forward in our mission to help scientists find answers where there are currently none.
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 centre of everything they do, making sure that research focuses on the questions and priorities that matter most to families.
Why this partnership matters
FIRES is a sudden-onset epilepsy syndrome that strikes without warning, causing relentless seizures. It has no known cure. Sam fell ill and tragically died just seven weeks later.
Our mission has always been to stop other families from facing the same heartbreak.
This partnership will allow researchers to apply for grants to study FIRES, with the first project a dedicated PhD studentship due to start within the next year.
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.