14/04/2026
One of our key priorities this year is to raise awareness of NORSE and FIRES, especially with those who can influence real change, including improved understanding, research, and support for families.
As part of this, we recently met with Catherine Atkinson MP, and we are incredibly grateful for her time, compassion, and willingness to listen. We shared Samās story, the devastating reality of this condition, and the work of Samās Superheroes - and importantly, what needs to change. We are hugely encouraged that Catherine will support us in helping to raise awareness and advocate for families affected by NORSE and FIRES.
We need far greater awareness of this condition, because awareness is what drives research, prioritises investment, sapes policy, and also ensures families are recognised and supported. For too long, families have suffered in silence, and had noone listening to their catastrophic stories.
Rare should never mean invisible, and it should never mean accepting the status quo. That's exactly what we are on a mission to do: challenge it!
Thank you Catherine ā¤ļø
Sam's mummy ā¤ļø
Really moving to meet Sam's Superheroes and hear more about their extraordinary work.
The charity was set up by Rachel in memory of her 5-year-old son, Sam Liew, from Derby, who died after becoming unwell with FIRES (Febrile Infection-Related Epilepsy Syndrome), a condition that can begin suddenly after a fever or mild illness.
Samās Superheroes is helping fund medical research and giving practical support to families through grants for specialist equipment, therapies, art therapy and even access to therapy animals, led by Daisy the therapy dog.
They were named Charity of the Year at the Lots for Tots Derbyshire Awards last year, and it is easy to see why. A truly special Derby charity making a real difference.
