What are NORSE and FIRES?
NORSE (New Onset Refractory Status Epilepticus) is a rare and catastrophic epilepsy that strikes suddenly in people with no history of seizures and with no clearly identifiable cause.
FIRES (Febrile Infection Related Epilepsy Syndrome) is simply a sub-type of NORSE, usually affecting children (though adults can be affected too). FIRES begins after a fever or febrile illness.
In around half of NORSE cases, no cause is found despite extensive testing — this is called cryptogenic NORSE.
What happens in NORSE and FIRES
Seizures begin without warning and escalate rapidly over hours or days into relentless, life-threatening, non-stop seizures. This is called refractory status epilepticus.
They often follow what seems like a mild viral illness - a cold, flu or stomach bug - something so common that no family or doctor could have predicted or prevented.
Growing evidence suggests that immune dysregulation and neuroinflammation may drive the aggressive, treatment-resistant seizures seen in many cryptogenic cases.
Treatment usually requires weeks or months in critical care, often involving:
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medically induced coma
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multiple anti-seizure medications and anaesthetics
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immunotherapies
Urgent seizure control is critical to prevent brain injury and swelling.
Outcomes
The outlook is devastating:
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around 1 in 5 do not survive the acute phase
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survivors can often face significant neurological disabilities and life-long epilepsy
Why Research Matters
There is currently no cure and little understanding of the underlying causes.
NORSE and FIRES are rare, sudden and catastrophic - and desperately under-researched.
More research is urgently needed to:
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uncover the underlying causes
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develop better and faster treatments
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improve outcomes
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bring us closer to a cure
Why Awareness Matters
When NORSE or FIRES strikes, life changes in an instant. Families are left facing a terrifying, traumatic and often heartbreaking reality. These conditions remain little known and poorly understood, leaving families isolated and unsupported.
Raising awareness helps:
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improve early recognition
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support families and clinicians
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drive investment in research
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build a community of understanding and action
Together, we can change this.
How YOU Can Help
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DONATE - to help us fund vital UK research with leading researchers, institutions and scientists.
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SHARE OUR STORY - awareness saves lives and builds momentum.
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CONNECT WITH US - whether you're a fundraiser, school, charity, business, medical professional, or researcher we'd love to work with you.
Together, we can drive change, inspire hope, and move closer to a cure.
🚨 Contact Us | 💖 Donate Now | 🚴♂️Fundraise | 📢 Share
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About the NORSE Institute
The NORSE Institute is a non-profit organisation based in the United States and is a global leader in the research, treatment, and support of those affected by NORSE and FIRES.
The Institute was founded from a story that is both tragic, powerful and deeply inspiring. In 2013, just three months after graduating from Stanford University, 22-year-old Daniel Wong was found unresponsive and in prolonged seizures. He had no history of epilepsy, no infection, no injury. Doctors placed him in a medically induced coma and tried every available treatment, but nothing worked. Daniel died less than three months later, never regaining consciousness.
His doctors had no explanation for his illness, and his autopsy revealed no identifiable cause.
Daniel’s mother, Nora Wong, refused to accept that families could lose a child so suddenly, without answers and without support. In 2015, she founded the NORSE Institute alongside neurologists Lawrence Hirsch, MD (Yale) and Nicolas Gaspard, MD (Erasme Hospital Brussels), who continue to serve as co-chairs of the Institute’s Medical and Scientific Advisory Board.
Under Nora’s leadership, the Institute has united families, clinicians, researchers and international experts, all working together to understand this devastating condition, advance research, and ensure that no family faces NORSE or FIRES without answers, support, or hop
Our Collaboration with the NORSE Institute
Our close collaboration with the NORSE Institute strengthens our ability to drive change, influence research, and support families across the UK.
Rachel Liew - Sam’s mum, Founder of Sam’s Superheroes Foundation, and now UK Country Lead and Ambassador for the NORSE Institute - is proud to contribute to their global mission. Together, we work to raise awareness, advance research, and strengthen support for families affected by NORSE and FIRES worldwide.
Our Contribution Includes
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Serving as the UK Country Lead and Ambassador for the NORSE Institute
Representing UK families, supporting international collaboration, and helping guide the Institute’s strategic direction.
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Funding the £3,500 redevelopment of the NORSE Institute’s website
Expanding global awareness of NORSE and FIRES and improving access to research, information, and international collaboration.
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Co-leading the NORSE Institute’s Family Support Group
Providing guidance, connection, and lived-experience insight to families navigating NORSE and FIRES.
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Supporting the NORSE Institute’s involvement in a major $15 million PCORI-funded international clinical trial
Rachel is honoured to serve on the PCORI Family Advisory Board, contributing lived-experience insight to this landmark research programme.
This study is investigating the effectiveness of anakinra and tocilizumab - two key immunotherapies - in the treatment of NORSE and FIRES. It involves 33 clinical centres across the world, including leading UK sites Great Ormond Street Hospital and King’s College Hospital London.
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Speaking at the 2023 NORSE & FIRES Family Conference
Where Rachel shared Sam’s story, “A Family Perspective” raising global awareness of the family experience.
Visit our Resources & Family Support section to explore tools, guidance, and support available through the NORSE Institute.
Visit our Resources & Family Support section to explore the tools, guidance and support available through the NORSE Institute.
Life AFter NORSE and FIRES:
Whilst many survive NORSE and FIRES, those who do, often face significant, long-term neurological challenges, including
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Developmental delays
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Cognitive difficulties
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Motor impairments
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Chronic and difficult-to-control epilepsy
Many survivors require ongoing therapies such as physical therapy, cognitive rehabilitation, and speech therapy to help improve their abilities and quality of life.
Managing drug-resistant epilepsy, cognitive challenges, and mental health needs requires a multidisciplinary care team working together to support both the patient and their family.
Supporting Families and Caregivers
The impact of NORSE and FIRES extends beyond the individual. Families and caregivers experience immense emotional and psychological stress throughout this lifelong journey. Access to counselling and support groups can provide vital comfort, understanding, and connection with others facing similar challenges.
Understanding Post-Intensive Care Syndrome (PICS)
Both patients and their families are at risk of Post-Intensive Care Syndrome (PICS). This syndrome is where the experience of critical care leads to long-term health impacts - physically, mentally, and emotionally.
To learn more, read this insightful article by Nora Wong, Founder of the NORSE Institute, and Raquel Farias-Moeller. Click here.
Apply for Family Grants
If your family member is experiencing NORSE or FIRES, we want to help. Families can apply for a grant to support ongoing care and get the resources they need.
Reach out to us today to find out how we can assist you during this difficult time.
To apply for a family grant, please contact us on rachel@samssuperheroes.co.uk.
Please note you must be resident in England or Wales.
More About NORSE & FIRES
From a FIRES mum perspective
This section is written from the perspective of a FIRES mum, not a clinician, to help families and lay people understand these conditions in clear, compassionate, everyday language.
The cause of NORSE and FIRES is not yet understood. Growing evidence suggests immune dysregulation and neuroinflammation play a leading role. Despite the devastation it causes, there is no cure.
Treatment Protocols
Whilst there is currently no proven or universally effective treatment for NORSE or FIRES, the NORSE Institute in the US has developed a recommended treatment algorithm, which many clinicians use to guide decision-making. You can view the algorithm by clicking here.
However, every case is different. It is critical that Neurologists and Intensive Care teams work closely together to tailor the most appropriate treatment plan for each individual.
Emergency and Critical Care
Urgent admission to critical care is essential. Children and adults are often placed into a medically induced coma for weeks, sometimes months, in an attempt to stop the seizures and reduce potential brain injury.
Treatment may include:
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multiple anti-seizure medications
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anaesthetic drugs
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immunotherapies to modulate the immune system and calm suspected brain inflammation
These treatments aim to regain seizure control and protect the brain.
Responses to Treatment Vary
Some people respond to treatment. Many do not.
Seizures can continue despite every effort and the very best care from critical care and neurology teams.
Recovery & Outcomes
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Full recovery, while not common, does occur.
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Around 1 in 5 people do not survive the acute stage.
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Survivors often face a long and difficult road to recovery.
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Many are left with significant neurological disabilities and lifelong, difficult-to-control epilepsy.
How Rare are NORSE AND fires?
NORSE and FIRES are extremely rare - estimated to affect around one in a million people. However, many experts believe they are significantly underreported. Reasons include:
• New terminology: “NORSE” and “FIRES” are relatively new terms and describe a clinical presentation rather than a formal diagnosis, meaning cases may be mislabelled or recorded under different conditions.
• Low awareness: Limited recognition among clinicians, first responders, and the public means early signs are often overlooked or not connected to NORSE or FIRES.
• Overlap with other conditions: Initial symptoms such as fever, confusion, and seizures mimic other neurological emergencies. As a result, cases may be misidentified as encephalitis or refractory status epilepticus of unknown cause.
Despite their rarity, NORSE and FIRES are catastrophic.
Low awareness among both the public and clinicians means they are often not recognised in the critical early stages - delaying urgent, specialist, and aggressive treatment when it is most needed.
Stages of NORSE and FIRES
How NORSE and FIRES Start
NORSE and FIRES begin suddenly and explosively, usually after a mild illness. When seizures first appear, this is known as the acute stage, the most dangerous and life-threatening phase of the condition.
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Seizures escalate rapidly and become continuous and resistant to treatment, known as super-refractory status epilepticus.
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No clear cause is usually identified in the early stages.
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Standard anti-seizure medications often fail to control the seizures.
Treatment Protocol - Acute Stage
There is no specific or universally effective treatment for NORSE or FIRES. Neurologists and Intensive Care teams must work together to tailor the most appropriate plan for each individual.
The NORSE Institute in the US has developed a recommended treatment algorithm for clinicians — click here to view it.
Urgent Critical Care Is Essential
Patients need to be admitted immediately to a specialist critical care unit. Children and adults often require a medically induced coma for weeks or even months to attempt to stop the seizures and limit potential brain injury.
Because NORSE and FIRES are life-threatening and potentially life-changing, treatment is typically aggressive and may include:
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multiple anti-seizure medications
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anaesthetic/sedative drugs
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immunotherapy to calm suspected brain inflammation
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intensive monitoring and organ support
This prolonged and intense medical intervention places enormous physical and emotional strain on both the patient and their family.
A Multidisciplinary Team Is Essential
NORSE and FIRES are highly complex and require coordinated care across multiple specialties, including:
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Neurology & Critical Care
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Immunology & Rheumatology
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Infectious Disease
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Anaesthesiology
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Nutrition & Metabolic Support
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Palliative Care
These teams work together to control seizures, manage complications, and provide vital supportive care.
Why Early Recognition Matters
TIME IS BRAIN.
Early, specialist treatment is critical to improve outcomes and limit long-term injury. Prolonged seizures (status epilepticus) can cause irreversible brain damage if not treated quickly and effectively. Every minute counts.
Road to Recovery – Chronic Stage
Surviving the acute phase is only the beginning. As seizures gradually reduce, patients enter the chronic stage - the start of a long and often extremely challenging recovery.
While full recovery is possible, many children and adults are left with:
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cognitive or developmental delays
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physical impairments
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emotional and psychological challenges
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chronic, often drug-resistant epilepsy
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social and learning difficulties
Families may face long-term care needs, frequent hospital visits, ongoing therapies, and significant adjustments to daily
Identifying NORSE and FIRES
NORSE and FIRES are not formal diagnoses - they describe a clinical syndrome, meaning a group of symptoms that occur together without a clearly understood cause. This makes identification especially challenging.
There is no specific test or biomarker for NORSE or FIRES. Doctors rely on the patient’s symptoms, medical history, response to treatment, and a careful process of ruling out other possible causes such as infections, autoimmune diseases, or metabolic disorders.
NORSE and FIRES are typically recognised only after other explanations have been excluded, often in cases where seizures continue despite treatment and begin following a mild illness.
Key Features of NORSE & FIRES
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Distinct Pattern: Often begins after a mild illness (FIRES after a febrile illness), followed by relentless, hard-to-control seizures.
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Unknown Cause: In most cases the exact cause is never found, though immune and inflammatory processes may play a role.
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Diagnosis of Exclusion: Extensive testing is required to eliminate other possible causes with similar symptoms.
What Resources are Available?
Whether you’re a healthcare professional, researcher, or family member wanting to learn more, here are some essential resources on NORSE and FIRES:
The NORSE Institute (United States): A global leader in NORSE and FIRES research, clinical guidance, and advocacy. Though based in the U.S., the NORSE Institute works closely with families, clinicians, and researchers worldwide.
🔗 Read NORSE Institute’s Guidelines for Investigating NORSE and FIRES
🔗 View Treatment Algorithms for Children and Adults
King's College Hospital, London (UK): Published a comprehensive paper featuring the NORSE Institute’s treatment guidelines and valuable insights into managing FIRES and NORSE in the UK.
🔗 Read King's College Hospital's publication
Epilepsy Research Institute (UK): Committed to advancing FIRES (and NORSE) research in the UK. In 2023, they funded the UK’s first FIRES research study at Aston University, Birmingham. They also raise awareness by sharing family stories, including Sam’s.
🔗 Read FIRES Research Study funded by the Epilepsy Research Institute
🔗 Read Sam’s Story on the Epilepsy Research Institute's Website
Why are the Seizures Difficult to stop?
Seizures in NORSE and FIRES are especially hard to stop because they don't behave like typical epilepsy. Standard seizure treatments often fail - not because they’re the wrong medications, but because the root cause of the seizures is still not fully understood.
NORSE and FIRES are more than just a seizure: They are believed to be triggered by a severe, abnormal immune response, unlike typical epilepsy. This means traditional epilepsy treatments may not be effective.
The body's immune system may be causing harm: In NORSE and FIRES, the body’s own immune response may be attacking or inflaming the brain, triggering the seizures, resulting in aggressive and treatment resistant seizures. Treatments must address the root cause of the seizures, but this is still unknown, although growing evidence suggests immune dysregulation and neuroinflammation play a major role. This is why a complex combination of anti-seizure medications and immunotherapies are usually used as part of the treatment.
Why are there Poor Outcomes?
NORSE and FIRES can cause severe and permanent brain damage due to the combination of uncontrolled, prolonged seizures and the body’s intense inflammatory response. It is a neurological emergency. Early recognition, and specialist treatment are essential to try to protect the brain and improve outcomes. Brain damage from NORSE and FIRES can happen due to a number of factors, including:
Prolonged Seizures: When seizures last longer than 30 minutes without stopping, they can cause permanent damage to brain cells (neurons). These neurons are extremely sensitive and cannot handle long periods of intense electrical activity. The longer the seizures continue, the more damage they cause - leading to problems with memory, thinking, and movement. Prolonged seizures also become harder to control as time goes on.
Inflammation: The immune system releases proteins called cytokines to fight infection. But in FIRES, the immune response can go into overdrive, creating a cytokine storm - releasing too many harmful inflammatory substances. This inflammation causes brain swelling, which can further damage brain cells.
Brain Shrinking & Scarring: Over time, repeated seizures and ongoing inflammation can lead to brain shrinkage (atrophy) and the formation of scar tissue (gliosis). These changes can cause lasting neurological challenges and often make seizures more resistant to treatment.
Long-Term Neurological Damage: Survivors of NORSE and FIRES face long-term neurological disability which can significantly impact quality of life for the survivor and their family.
Help Us Change This
Your donation can drive ground breaking research, support our mission to raise awareness of NORSE and FIRES, and help us provide essential financial grants to families navigating life with these rare epilepsies.
It could also help us fund animal-assisted and creative therapies to young people who need support with their mental health.
Every contribution matters. Whether it's a one-time gift or ongoing support, you're helping us bring hope, care, and progress to those who need it most.
Join us in honouring Sam’s legacy - together, we can make a real difference.
