Raising Awareness: Sharing Sam’s Story at the Epilepsy Research Institute Annual Dinner

Last night, I had the immense honour of sharing Sam’s story at the Epilepsy Research Institute’s annual dinner in London, in front of their Board and Scientific Advisory Committee.

I spoke about Sam’s monumental seven-week fight with FIRES (Febrile Infection Related Epilepsy Syndrome) a sudden-onset epilepsy syndrome that causes relentless seizures and has no known cure. Whilst our story is deeply tragic, I hoped it would shine a light on why the Institute’s work is so vital and why funding epilepsy research is essential to finding a cure for FIRES.

Being in the room with some of the UK’s most esteemed epilepsy experts, researchers, and charity leaders was incredibly humbling.

Their dedication to change and innovation reminded me of the incredible support that exists within the epilepsy community.

Why Advocacy and Raising Awareness Matters

FIRES and NORSE strike without warning in healthy children and adults. Within hours, they trigger life-threatening seizures that are exceptionally difficult to stop.

Tragically, one in five children do not survive the acute stage. Researchers believe these seizures are triggered by a virus that causes a rare and abnormal immune or inflammatory response in the brain.

Raising awareness about FIRES is critical. It not only helps fund life-saving research but also to support families facing this rare and devastating condition.

Advocacy ensures that patients’ voices are heard, families are supported, and the urgent need for treatments and understanding is widely recognised.

Speaking Out for Change

Sharing Sam’s story in public forums isn’t easy, but it has the power to inspire and educate. I’m available to speak at events, podcasts, and panels to share our experience with FIRES, highlight the importance of research, and demonstrate how local communities and organisations can support families facing similar challenges. Just drop me a message of the contact page to discuss.

The Institute has already funded the first ever UK research study into FIRES at Aston University a huge step forward. But we still have a long way to go.

Right now, we don’t know what causes FIRES, and there are no effective treatments. More research is urgently needed to save the lives of children and adults alike.

How Support Makes a Difference

Support comes in so many forms.

Whether through attending events, starting fundraising initiatives, forming business partnerships, or making a one-off donation, every contribution helps fund research, improve treatments, and bring hope to families affected by FIRES.

If you’d like to stand alongside us, donate now or get in touch to collaborate. Together, we can keep Sam’s legacy alive and drive real change.

Donate Now