AWARENESS
We raise awareness of NORSE and FIRES to improve understanding, strengthen collaboration and ensure these devastating conditions receive the recognition needed to drive research, secure funding and improve outcomes.
Our Goal
Our goal is to build greater understanding, strengthen collaboration and drive lasting change by bringing together clinicians, researchers, policymakers, charities and families.
Saving Lives
Awareness saves lives. It drives earlier recognition, strengthens collaboration, increases research investment, and improves long-term support for families living with NORSE and FIRES.
Current Projects
Explore below our current awareness campaigns and projects across the UK and beyond.
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Awareness of NORSE and FIRES underpins everything we do. It is the catalyst for change — accelerating research, improving understanding, influencing national policy, securing funding, and ultimately improving outcomes for children and adults affected by these devastating conditions.
PARLIAMENT & ADVOCACY
In April 2026, Samantha Niblett MP raised awareness of NORSE and FIRES in the UK Parliament, helping ensure the voices of patients, survivors and bereaved families are heard.
During her parliamentary question, she highlighted the need for greater awareness, research and support for those affected by NORSE and FIRES, and sought support in arranging a meeting with the Minister for Health and Social Care to discuss these important issues further.
Watch the short below to see the parliamentary question and response.
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SPEAKING & ADVISORY ROLES
We share lived experience at conferences, research events and professional meetings to help improve understanding of NORSE and FIRES.
By bringing the family perspective into these discussions, we help ensure that survivors and bereaved families have a voice in shaping future research, care and support.
Recent speaking and advisory roles include the Epilepsy Research Institute Annual Dinner, NORSE Institute Annual Conference, and international patient and family advisory work supporting NORSE and FIRES research.
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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COMMUNITY OUTREACH
We connect with communities through fundraising events, awareness activities and our therapy dog services, helping more people understand NORSE and FIRES whilst supporting children with our therapy dog interventions.
From Sam's Scootathon and awareness stands, to charity events and school-based therapy dog sessions, we create meaningful opportunities for people to learn about NORSE and FIRES and hear the stories of the families affected by it.
Every conversation, event and connection helps build a more informed, compassionate and engaged community.
Watch our Short Film - Sam's Scootathon
LOCAL & NATIONAL MEDIA
We work with local and national media to share family stories, raise awareness of NORSE and FIRES, and highlight the need for greater research, awareness and family support.
Our work has featured across television, newspapers, radio, online publications, podcasts, interviews and social media, helping us reach audiences far beyond our immediate community.
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.