REAL PEOPLE, REAL STORIES
NORSE and FIRES are rare, but their impact is very real. Behind every diagnosis is a person, a family, and a story that matters — stories that deserve to be told and heard.
Tap each story to read more.
Would you like to share your NORSE or FIRES story?
We would be honoured to share your loved one's story on our website, and where appropriate, our social media channels. If you would like us to include a photo, you are welcome to upload below.
Your story can bring comfort to other families facing New Onset Refractory Status Epilepticus (NORSE) or Febrile Infection Related Epilepsy Syndrome (FIRES), while helping to raise awareness of these rare, life-threatening conditions.
It doesn't matter where you live in the world — every story matters, every story deserves to be told, and it may help another family feel less alone.
If you would prefer to share your story in a different way, you are welcome to email me directly at: rachel@samssuperheroes.co.uk
I'm here to listen, and we will treat your story with the utmost care, sensitivity and respect.
HELP US TURN THEIR STORIES INTO HOPE FOR FUTURE FAMILIES
Every donation, big or small, makes a real difference. Your support helps us fund vital research, raise awareness of NORSE and FIRES, and support families facing the unimaginable.
Research | Awareness | Family Support
Every donation helps us do all three — for every family affected by NORSE and FIRES.
