A Derby mum’s campaign to fund vital research into a rare and devastating condition, launched in memory of her son, has been given a major boost through a new partnership with the Epilepsy Research Institute.
Rachel Liew launched Sam’s Superheroes Foundation after five-year-old Sam tragically died just seven weeks after falling ill with FIRES (Febrile Infection Related Epilepsy Syndrome) – a sudden-onset epilepsy syndrome that causes relentless seizures and currently has no known cure.
Determined to prevent other families from facing the same heartbreak, Rachel set out to raise £50,000 for urgently needed medical research.
Now, thanks to match-funding support from the Epilepsy Research Institute, this figure has been more than doubled, bringing the total investment in FIRES research to £110,000.
Now Rachel, who has raised £35,000 towards her total, is appealing for businesses and the community to support her in fulfilling the £50,000 pledge.
She said: “When I set up Sam’s charity, I never imagined we’d be co-funding research on this scale. This is a pinch-me moment, powered entirely by love, and it has the potential to change – and save – lives.
“But this is more than a funding milestone, it’s a true collaboration between scientists, families and communities and it shows our collective power in driving medical research for rare diseases to find answers and bring hope where there is none.
“Sam’s life was cruelly taken from us, and he will always be my driving force behind the search for answers and hope. But this isn’t just for Sam, it’s also for the children and families living with FIRES now and for the doctors who feel helpless when they have no cure to offer.”
Rachel, who has pledged to cover any shortfall from her own pocket, hopes to raise the final £15,000 through activities such as cake sales, sponsored walks, quiz nights and challenge events. Every contribution will go directly towards advancing vital research.
She also hopes that businesses looking to adopt a charity or fundraise for a particular cause may consider supporting Sam’s Superheroes Foundation.
The funding will open the door for scientists to apply for grants to study FIRES, with the aim of launching projects 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.”
For further information please contact Sarah Newton at Penguin PR or email [email protected]
