FAMILY SUPPORT
We stand beside families affected by NORSE and FIRES, providing practical support, specialist guidance and hope from the acute stage through to long term recovery or bereavement. No family should face this unimaginable journey alone, or without the right specialist support.
Our Goal
To ensure every family affected by NORSE and FIRES has access to compassionate, specialist support, trusted information and a community that understands what they are facing - at every stage of their journey.
How We Help
Every family's journey is different, which is why we provide bespoke support tailored to individual needs.
Whether someone is in the acute stage of NORSE or FIRES, navigating long-term recovery, or living with bereavement, we work alongside families to provide the right support at the right time.
By combining lived experience, specialist expertise and trusted partnerships, we can offer practical, emotional and clinical support that is shaped around each family's circumstances.
Explore our family support services below.
Debbie Dean
Children's Epilepsy Nurse and Specialist Counsellor
No family should face the unimaginable alone. Compassionate, personalised and professional support can provide hope and strength in the darkest moments, helping families navigate the acute stage, recovery or bereavement.
FAMILY GRANTS
Caring for a child or adult with NORSE or FIRES can bring unexpected financial challenges. Our Sam’s Superheroes Family Grants offer up to £500 to support families navigating life with this devastating condition.
Whether it’s funding essential medical equipment, therapy sessions, travel expenses for hospital stays, or specialist support, our goal is to ease the burden—so families can focus on what truly matters: caring for their loved one.
HOW WE CAN HELP
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Special Days Out: Covering the cost of trips to places like the seaside, theme parks, or the theatre, giving families a chance to make cherished memories together.
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Tailored Experiences: Arranging visits from entertainers or specialists, whether at home or in hospital, to bring joy in both the acute and chronic stages of FIRES.
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Family Breaks & Holidays: Contributing towards a short break or holiday within the UK, offering families much-needed respite in the countryside or by the sea.
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Specialist Equipment: Funding essential items that improve quality of life, such as wheelchairs, monitoring equipment, sensory tools, hoists, and feeding tubes.
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Hospital Stay Support: Helping with the financial strain of having a loved one in intensive care, covering travel, accommodation, and practical costs.
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How to Apply
If you’re under 25 and living in England or Wales, and FIRES has impacted your life, we encourage you to apply for support. Our application process is simple, and we review requests on a rolling basis to ensure families facing urgent needs receive help as quickly as possible.
Grants are awarded at the discretion of our Trustees, in line with the charitable purposes and objectives of Sam’s Superheroes Foundation.
For more information, please contact: Rachel@samssuperheroes.co.uk
REAL STORIES DRIVE CHANGE
The courage of every family who shares their NORSE or FIRES story cannot be overstated.
Every story shared, raises awareness, deepens understanding, helps drive research, and ensures that no one affected by NORSE and FIRES is forgotten.
Tap a photo to read each story.
DIGITAL & PRINTED RESOURCES
We have invested in the redevelopment of both the Sam's Superheroes and NORSE Institute websites to improve access to information, family stories and educational resources.
Through our social media channels and dedicated Family Stories hub, we share lived experiences, raise awareness, give families a voice and help families feel less alone. Every family should have chance to share their story and for it to be listened to.
We are also developing an animation, awareness film and other digital and printed resources to help improve understanding of NORSE and FIRES amongst families, healthcare professionals and the wider public.
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Help Continue Sam's Legacy
Every donation helps us fund research, awareness and support families affected by NORSE and FIRES.
Together, we are helping to improve outcomes for people affected by NORSE and FIRES and create a better future for patients and families.
Your support makes this possible.