Sam’s Big Scoot, organised by the charity Sam’s Superheroes Foundation, will raise money to research febrile infection-related epilepsy syndrome…
Aston University is to host the start of a charity kick scooter challenge from Birmingham to Derby which aims to raise £50,000 for research into a rare and catastrophic form of epilepsy. Sam’s Big Scoot, which begins on 20 September 2024, is being organised by the charity Sam’s Superheroes Foundation, which was set up in 2021 by Rachel Liew in memory of her son Sam.
At the age of five, Sam developed febrile infection-related epilepsy syndrome (FIRES), which sadly took his life.
Rachel Liew:
“We couldn’t save my beautiful brave little boy, but we must try to save other children and I am completely committed to raising money for research into this catastrophic and devastating syndrome. It’s not yet understood what causes FIRES, and there are no known effective treatments. FIRES is also desperately under-researched, with the first and only UK research starting in 2023. We have to stop other families going through the horrific loss we have experienced, and I would urge anyone who can help – in any small way – to get in touch with us.”
Sam’s 85-year-old grandmother Anne Roberts will be one of 40 people who hope to complete a 44-mile journey over three days on traditional kick scooters from Aston University, home of the first funded FIRES funded research project in the UK, to Sam’s home of Mickleover, in Derby. Sam went everywhere on his red kick scooter and his mum Rachel will carry it on the journey.
Research into FIRES at Aston University is led by Dr Sukhvir Wright, in a project that began in 2023, funded by the Epilepsy Research Institute. Professor Gavin Woodhall from Aston Pharmacy School is also on the research team along with co-investigators from Great Ormond Street Hospital in London, University College London (UCL) and collaborators from Yale University in the US. Members of the team will be taking part in Sam’s Big Scoot.
FIRES, a very rare condition, typically affects previously healthy children and adolescents with no prior history of seizures, usually after an infection with a fever, in Sam’s case thought to be a common cold. The seizures begin suddenly and rapidly progress into relentless seizure activity that is exceptionally difficult to stop. Children often remain in an induced coma for weeks to months. 12% of children and 30% of adults who develop FIRES die, and those who survive often suffer significant neurological disabilities and lifelong epilepsy. There are currently no specific treatments.
Most cases of FIRES have no identifiable cause, however, analysis of fluid from the brain and spinal cord, known as cerebrospinal fluid (CSF), shows high levels of molecules associated with inflammation. These molecules have been shown to cause seizures in laboratory models. Dr Wright’s team are using these CSF samples to try and create world-first accurate disease models of FIRES which will allow testing of treatments. The researchers will also identify UK paediatric cases and collect clinical information to learn about current treatments and outcomes. They hope to develop new guidelines for treating FIRES in what they call “bench to bedside” research.
Dr Wright:
“It has been an honour and privilege to meet and work with Rachel, Sam’s mum, and her charity Sam’s Superheroes that aims to raise awareness and fundraise for the devastating condition FIRES. The Big Scoot will provide a wonderful opportunity for supporters, researchers and clinicians to come together in Sam’s memory to honour these aims and we are delighted to be able to kick it all off at Aston University. We wish all the riders the best of luck for this awe-inspiring challenge!”
Visit the Sam’s Big Scoot webpage for more information about the charity challenge.
