ABOUT NORSE and FIRES
NORSE,New Onset Refractory Status Epilepticus, is a catastrophic epilepsy that strikes suddenly in people with no prior history of seizures, and without a clearly identifiable cause.
FIRES, or Febrile Infection Related Epilepsy Syndrome, is a subcategory of NORSE usually affecting children (though adults can be affected too), and is defined by its onset after a febrile illness.
In around half of NORSE cases, no cause is found despite extensive testing - this is known as cryptogenic NORSE.
Seizures in both FIRES and NORSE appear without warning, escalating rapidly over hours or days into relentless, life-threatening non stop seizures (refractory status epilepticus) that is extremely difficult to control. The seizures often begin after what seems like a mild viral infection, such as a cold, flu, or stomach bug, with symptoms so common that no family, friend, or doctor could have predicted or prevented the onset.
Growing evidence suggests that immune dysregulation and neuroinflammation play a major role in driving the aggressive, treatment-resistant seizures seen in many cryptogenic cases.
Treatment usually requires weeks or months in critical care. Patients are often placed in a medically induced coma and treated with multiple anti-seizure drugs and immunotherapies in an urgent effort to stop the seizures and protect the brain. Relentless seizures can cause neuronal injury and brain swelling - making urgent seizure control critical.
The outlook is devastating: around 1 in 5 do not survive the acute phase. Survivors often face significant neurological disabilities and drug-resistant epilepsy.
There is currently no cure, and little is understood about the underlying causes. Research can change this - bringing more understanding on the causes, improving treatments, and one day bringing us closer to a cure.
The Difference Between NORSE and FIRES
FIRES is a subcategory of NORSE. The key difference between the two is whilst both appear to follow a simple illness or virus, in FIRES it follows an illness involving a temperature (febrile). FIRES usually occurs in children, although it can also effect adults.
Research Matters
NORSE and FIRES are rare, sudden, and catastrophic epilepsies. Growing evidence suggests immune dysregulation and neuroinflammation play a leading role. However, our understanding on the underlying causes is very limited, which makes treating it very challenging. There are no effective treatments and currently there is no cure.
Urgent research is needed to:
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Uncover the underlying causes
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Develop better and faster treatments
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Bring us closer to a cure
Awareness Matters
Raising awareness of NORSE and FIRES is vital. When a child or adult is struck down by them, life changes in an instant. Patients and families are left facing a devastating reality. These type of epilepsies are cruel, relentless, and tragically under-researched.
Together, we can change this - through education, advocacy, and by driving forward vital research.
How YOU Can Help
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DONATE to help us fund vital research in collaboration with leading hospitals and researchers.
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CONNECT WITH US if you are a fundraiser, medical professional, or researcher who would like to join our mission.
TOGETHER, we can drive change, inspire hope, and move closer to a cure.
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Is there a CURE?
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
There is no specific or effective treatment for NORSE and FIRES. Neurologists and Intensive care teams need to work together to tailor the most appropriate treatment plan for each person.
The NORSE Institute in the US, has a recommended algorithm for NORSE and FIRES click here.
Urgent admittance to critical care is essential. Children and adults often need to be placed in a medically induced coma for weeks or even months to try to stop the seizures and minimise the damage they can cause to the brain. Alongside this, multiple anti-seizure medications and anaesthetic drugs are used, and immunotherapy is often given to help modulate the immune system and calm suspected brain inflammation in an effort to regain seizure control.
While some children and adults respond to treatment, many do not, and seizures can persist despite best efforts.
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Full recovery, while not common, does occur.
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Seizures can continue despite every effort and the best care.
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Around 1 in 5 do not survive the acute stage.
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Those who do survive will face a long road to recovery. Survivors can face significant neurological disabilities and life long difficult to control epilepsy.
Awareness Matters
NORSE and FIRES are extremely rare - even many doctors have not heard of these type of epilepsies. Because of this, early signs may be missed - delaying treatment. Raising awareness is crucial to help:
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Improve recognition of early symptoms
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Speed up identification
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Enable faster, aggressive and more targeted interventions
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To support more research into NORSE and FIRES - to find a cure
Research into NORSE and FIRES is still in its infancy. Over recent years, growing awareness - driven by patient stories, family advocacy, doctors and the work of the NORSE Institute in the US and the Epilepsy Research Institute in the UK, has begun to shine a light on these devastating epilepsy syndromes. As a result, more studies are being funded, bringing real hope to families. But we must keep up the momentum: we urgently need more research funding to prevent more lives from being torn apart, and innocent lives lost.
How Common is NORSE and FIRES?
NORSE and FIRES are rare - estimated at around one in a million people. Many experts believe they’re underreported because:
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New terminology: “NORSE” and “FIRES” are relatively new terms and describe a clinical presentation rather than a formal diagnosis, so cases may be misdiagnosed.
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Low awareness: Limited recognition among clinicians, first responders, and the public means early signs can be overlooked.
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Overlap with other conditions: Early symptoms (e.g., fever and seizures) mimic other neurological emergencies, so cases may be misidentified as encephalitis or refractory status epilepticus of unknown cause.
Despite their rarity, NORSE and FIRES are devastating. Low awareness among both the public and clinicians means they often go unrecognised in the critical early stages, delaying urgent, specialist, and aggressive treatment.
Stages of NORSE and FIRES
How NORSE and FIRES Starts
NORSE and FIRES begin suddenly and explosively, usually after a mild illness. When the seizures start, this is commonly called the acute stage. It is the most dangerous and life-threatening stage of the condition.
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Seizures start explosively and rapidly escalate to becoming non-stop and resistant to treatment - which is often called super refractory status epilepticus.
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There is usually no clear cause identified at this point.
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Standard anti-seizure medications often fails to stop the seizures.
Treatment Protocol - Acute Stage
There is no specific or effective treatment for NORSE and FIRES. Neurologists and Intensive Care teams work together to tailor the most appropriate treatment plan for each person. The NORSE Institute in the US, has a recommended algorithm for NORSE and FIRES click here.
Urgent admittance to a specialist critical care unit is essential. Children and adults often need to be placed in a medically induced coma for weeks or even months to try to stop the seizures and minimise the damage they can cause to the brain.
Because NORSE and FIRES are life-threatening and potentially life-changing, an aggressive approach is normally essential. Treatment typically involves combinations of anti-seizure and sedative medications, alongside immunotherapy to help modulate the immune system and calm suspected brain inflammation, in an effort to regain urgent seizure control.
A child, or adult may remain in critical care in an induced coma for weeks or even months. This prolonged and intense medical intervention places extreme physical and emotional strain on both the patient and their family.
A Multi-Disciplinary Team is Essential
NORSE and FIRES are complex, life-threatening syndromes with no universally effective, standardised treatment protocol and therefore care must be carefully coordinated, personalised, and delivered by a multidisciplinary team of specialists, including:
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Neurology and Critical Care
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Immunology and Rheumatology
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Infectious Disease Specialists
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Anaesthesiology
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Nutrition and Metabolic Support
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Palliative Care
Together, these teams work to control seizures, manage life-threatening complications, and provide vital, complex and supportive care.
Why Early Recognition Matters
TIME IS BRAIN. Early, specialist treatment is critical to improve outcomes and limit long-term damage. Every minute counts when seizures are ongoing - this is a medical emergency. Prolonged seizures (status epilepticus) can cause irreversible brain injury if not treated quickly and effectively.
Road to Recovery - Chronic Stage
Surviving the ACUTE phase of NORSE and FIRES is only a small part of the journey. As the constant seizure activity gradually subsides, the CHRONIC phase is entered. This starts the beginning of a long and incredibly challenging path to recovery.
Whilst full recovery is possible, many children and adults are left with significant neurological disabilities and chronic - often drug resistant epilepsy. Ongoing medical challenges may include:
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Cognitive and developmental delays
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Physical impairments
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Emotional and psychological challenges
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Social and learning difficulties
Families often face long-term care needs, including frequent hospital stays, therapy sessions, and major adjustments to daily life.
Identifying NORSE and FIRES
NORSE and FIRES are not formal diagnoses, but rather they are a description of a clinical syndrome. A syndrome is a group of symptoms and features that occur together, without a clearly understood cause. This makes it especially difficult to identify them when they occur.
There is no specific test or biomarker for NORSE and FIRES. Doctors must rely on a detailed review of the patient’s medical history, symptoms, and how they respond to treatments, while systematically ruling out other possible causes - such as infections, autoimmune conditions, or metabolic disorders.
NORSE and FIRES is typically identified after other explanations have been excluded, often where seizures persist despite treatment, and / or may have appeared following a mild illness.
Here’s what you should know about identifying NORSE and FIRES:
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Distinct Pattern: Typically starts 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 remains unknown, although scientists believe immune and inflammatory factors may play a role
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Process of Exclusion: Before identifying NORSE and FIRES, doctors must conduct many tests to rule out other infections or conditions that could cause 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. Sam’s Superheroes Foundation is proud to partner with them to support this vital mission.
🔗 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 several key factors:
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. Many survivors of NORSE and FIRES face long-term neurological disability which can significantly impact quality of life for the survivor and their family.
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 require ongoing therapies such as physical therapy, cognitive rehabilitation, and speech therapy to help improve their abilities and quality of life.
Comprehensive Care for Patients and Families
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.
NORSE Institute
The NORSE Institute is a non-profit organisation based in the United States. They are leading the global efforts in research, treatment, and support for NORSE and FIRES.
The story as to why the institute was founded is both tragic, powerful and inspiring. In 2013, just 3 months after graduating from Stanford University, 22 year-old Daniel Wong was found unresponsive and gripped by prolonged seizures. He had no history of epilepsy, no known infection or injury. Doctors placed Daniel in a medically induced coma and tried every treatment available. None of them worked. Daniel died less than 3 months later, never regaining consciousness.
Daniel's doctors had no explanation for his illness and his autopsy report found no identifiable cause. His mother, Nora Wong, reacted with disbelief and became determined to unravel the mystery of her child's illness. In 2015, she founded the NORSE Institute with Lawrence Hirsch, MD (Yale) and Nicolas Gaspard MD, (Erasme Hospital Brussels) who still serve as co-chairs of the Institute's Medical and Scientific Advisory Board.
As Executive Director, she has brought together families, clinicians, and basic scientists who experience this rare, mysterious illness from different perspectives to work together to solve the puzzle of these devastating seizures. Her goal was simple but ambitious - to make sure no family has to face NORSE or FIRES without answers, support or hope for better treatment.
Our Collaboration with the NORSE Institute
Rachel Liew, Sam’s mum and Founder of Sam’s Superheroes Foundation, is proud to support the work of Nora Wong and the NORSE Institute. Together, we collaborate to raise awareness, drive research, and provide meaningful support to families impacted by NORSE and FIRES.
Our Contribution Includes
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Funding a £3,500 redevelopment of the NORSE Institute's website - helping expand global awareness, research, and collaboration.
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Co-leading the NORSE Institute’s Family Support Group, providing guidance and connection for affected families.
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Serving on the Patient-Family Advisory Board, contributing the lived experience of families to help shape the Institute’s research direction and support their research grant process.
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Speaking at the 2023 NORSE & FIRES Family Conference, where Rachel shared FIRES story - "A Family Perspective"
Visit our Resources & Family Support section to learn more about the tools and resources the NORSE Institute offer.
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.
Resources and Support for Families
What are SEIZURES?
A seizure is a sudden burst of electrical activity in the brain. This can cause changes in behaviour, movements, feelings, or awareness. How a seizure affects you depends on which part of the brain is involved. There are many different types of seizures - visit Epilepsy.org.uk to learn more.
Epilepsy is usually diagnosed when a person has two or more seizures, at least 24 hours apart, that aren't caused by something temporary like illness or injury. Epilepsy is most often treated with daily medicine that helps stop or reduce seizures. These medicines work by calming the electrical activity in the brain. Many people with epilepsy can live full, active lives with the right treatment.
Quick Facts!
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Most seizures last 30 seconds to 2 minutes and usually stop on their own
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Seizures lasting longer than 5 minutes are a medical emergency and need immediate treatment
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Studies show that the longer a seizure lasts, the harder it becomes to stop
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Seizure medications also become less effective the longer the seizure goes on
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If a seizure goes on for 30 minutes or more, it can cause permanent brain damage due to ongoing abnormal brain activity
Did you know?
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During prolonged seizures, the brain releases substances called pro-inflammatory cytokines, which cause inflammation
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This inflammation can make the brain more prone to having further seizures and may make those seizures harder to stop
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Over time, this can create a cycle where each prolonged seizure increases the chance of future seizures - and makes them harder to stop
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It can also make seizure medications less effective, making it more challenging to control seizures