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Event Teasers

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Encephalitis - a growing global threat : Global Policy Launch

Join us virtually (online) to the launch of the World Health Organization’s technical brief on Encephalitis. Dr Ava Easton, Chief Executive of Encephalitis International is thrilled to host the launch of the World Health Organization’s technical brief on Encephalitis. The event will feature a panel of experts including Dr Nicoline Schiess from the World Health […]

19 February 2025
Online
View Event
Images of participants in the Lisbon Half Marathon.

Lisbon Half Marathon

The EDP Lisbon Half Marathon forms part of Portugal’s biggest running event and is one of the races in the popular SuperHalfs Series. The route follows the shores of the River Tagus and crosses the iconic bridge, Ponte 25 de Abril, giving you unbeatable views of Lisbon.

9 March 2025
Lisbon, Portugal
View Event
Images of participants in Run Rome The Marathon.

Run Rome The Marathon

Run Rome The Marathon offers an unmatched route through history, culminating at Italy's world-famous Colosseum. Join 30,000 runners to take in the sights of Rome in the most spectacular fashion, with ambient temperatures and breath-taking views. 

16 March 2025
Rome, Italy
View Event

Full Story Archive

This section is intended for use only on the main Stories page.

Autoimmune Encephalitis Lived Experience - Ana and Jesus' Story

I have been a volunteer with Encephalitis International ever since, sharing our story and information about encephalitis whenever I have the opportunity. By sharing our story at the My Brain : My Story : My Family conference, I hope to help others feel as understood and reassured as I did two years ago, when I first discovered Encephalitis International.

Read Story
Steven's encephalitis story

Unknown Encephalitis Lived Experience - Steven's story of his mum

My journey took an unexpected turn when encephalitis struck my family, taking away my beloved mum. It was a devastating blow that changed my life in ways I never could have imagined. At the same time, I was learning my craft as a teacher, trying to support my students and navigate the complexities of the classroom, all while the world was in the grip of the Covid-19 pandemic.

Read Story

Seronegative Autoimmune Encephalitis Lived Experience — Matt's Story

Those two weeks were a blur I know only through stories from my family and doctors. I was tested for serious illnesses like EEE, West Nile, and Zika, all of which came back negative. Then things got even more frightening—I began losing vision and experiencing double vision, though I don’t remember this myself. My body was scanned for cancer, but thankfully, that came back clear too.

Read Story
Julian shares his experience of viral encephalitis

Viral Encephalitis Lived Experience — Julian's Story

During the following 2 weeks, the doctors had spirited debates about the nature of my illness. At first, it was whether I had brain leukaemia or viral encephalitis. Then, when the evidence ruled out leukaemia, it was which type of viral encephalitis; they never found out, with all the tests coming back inconclusive. All the same, there were no known treatments for most types of viral encephalitis. I was given herpes antivirals as a Hail Mary. All anyone could do was wait and see. My body and my brain were the deciding factors now.

Read Story
Kellie and her daughter, Arwen, who was diagnosed with autoimmune encephaltis

Autoimmune Encephalitis Lived Experience — Kellie's Story

In late December 2022, Kellie's world was turned upside down when Arwen became seriously unwell. She was diagnosed in early January 2023 with Autoimmune Encephalitis, and thanks to the quick thinking of her paediatrician, she was transferred to a specialist hospital for the correct treatment.

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VZV Encephalitis Lived Experience — Tim H's Story

Tim, a father of two young children, felt like he was suffering from flu after a short holiday with his family. He began to feel worse and started to hallucinate. The doctors diagnosed him VZV encephalitis. Here he shares his story.

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Viral Encephalitis Lived Experience — Graham and Sandra's story

During the My Brain: My Story event at the Liverpool Medical Institution, Graham delivers a presentation on the effects of viral encephalitis on him and his wife Sandra 22 years ago and how their family continue to manage its outcomes together.

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Autoimmune Encephalitis Lived Experience — Diane's Story

Diane had autoimmune encephalitis in 2018, she was 15; during the following months she was in a semi-coma state where she couldn’t talk, walk, eat or see due to complete vision loss from high intracranial pressure.

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Lived Experience of Encephalitis — Eduarda's Story

"After the three days I only got worse, so my mum took me to the hospital again. She later told me that on the way to the hospital I started saying things that didn’t make sense. I asked her several times where we were going and why. Within one hour of arriving at hospital, I had two seizures and was sent to the ICU. I don’t have any memory of this, as a matter of fact, I don’t have any memory of most of 2022..."

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Herpes Simplex Virus Encephalitis Lived Experience — Jim's Story

Jim's career included 20+ years with the Port Authority of NY & NJ; however, as a result of his herpes simplex virus encephalitis diagnosis, he retired last February.

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John's encephalitis story

Viral Meningoencephalitis Lived Experience - John's Story

Before developing encephalitis, John worked as principal teacher in a large school for children with complex learning needs in the center of Dublin. He was actively involved both locally and nationally on Education Boards and worked part-time in three of the teacher training colleges. He has been playing piano since he was a child and is convinced that his passion for music was a fundamental part of his recovery.

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Henry

Encephalitis and Bereavement Shared by Parents, Louise and Richard — Henry's Story

Henry's parents, Louise and Richard, share the trauma they endured when Henry died. Henry spent one week in hospital after his parents recognized that something wasn't right. After many tests, and eventually surgery, Henry sadly passed away from encephalitis a few days before his 9th birthday.

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Douglas and his friends

Autoimmune Encephalitis Told by Wife, Gail — Dougie's story

Gail shares her husband, Dougie's, story of autoimmune encephalitis. Gail talks about how Dougie went from being very active - running and playing rugby - to battling through the effects of encephalitis. Dougie sadly passed away in April 2024.

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Tick-Borne Encephalitis Lived Experience — Joe's Story

Joe, who was affected by tick-borne encephalitis when he was travelling in Scotland, talks about his lived experience. He had fever like symptoms when he realized something was wrong.

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Anti-NMDAR Encephalitis Lived Experience — Casey's story

I felt my vision begin to swim and before I knew it, I had passed out. That was the last day I spent at Primary school, and I didn’t know. Everything happened so quickly after that day. I lost the ability to walk, to talk, to eat and do anything else all in quick succession.

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Chloe and her family

Enteroviral Meningoencephalitis Lived Experience — Chloe's Story

Ceinwen's daughter Chloe became unwell with enteroviral meningoencephalitis when she was three-years-old. She has been on the road to recovery for over 11 years. Ceinwen tells her story of encephalitis at the My Brain My Story event in 2023.

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Abi at the rugby pitch

Anti-NMDAR Encephalitis Lived Experience — Abi's Story

Abi is a professional international rugby player for England and Great Britain 7s; competing in the 2021 and 2024 Olympics. In June 2022, she had her first seizure. She was misdiagnosed which led to being sectioned. She was then diagnosed with Anti-NMDAR encephalitis in July 2022. Abi talks about her experience of encephalitis at the My Brain My Story event in 2023.

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Judiel

Anti-NMDAR Encephalitis Lived Experience — Judiel's Story

Judiel was a nurse when she was diagnosed with encephalitis at the aged of 25 in 2021. She tells her story as part of the Encephalitis International My Brain and Medicine event 2024.

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Herpes Simplex Encephalitis Lived Experience — Steven's story

Steven shares his experience of herpes simplex virus (HSV) encephalitis In March of 2023 at the age of 35, I became sick. At first, I thought it was nothing, just a flu or stomach bug; nothing to worry about. After about 3 straight days of the worst headache of my life, aches and a temperature, […]

Read Story
Photo of Hatice smiling

Unknown Cause Encephalitis Lived Experience — Hatice's story

Hatice shares her experience of unknown cause encephalitis My name is Hatice, I am 29 years old and I live in Turkey. I want to tell you my story. in July 2021, I caught the COVID-19 for which I took immunosuppressive medications. These drugs were later removed. I recovered within 2 weeks and there were […]

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Elizabeth showing a medal after marathon swimming 20 bridges.

Herpes Simplex Encephalitis Lived experience — Elizabeth H's story

Elizabeth shares her experience of herpes simplex virus encephalitis Before encephalitis I’m a 62-year-old woman living in Colorado and have always pursued endurance sports: I was a competitive swimmer for 10 years, specializing in one and two-mile open water events before college. I’ve run 11 marathons, including five Boston marathons and four New York City […]

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Herpes Simplex Virus Encephalitis Lived Experience — Jennifer's story

Jennifer shares her experience of herpes simplex virus (HSV) 1 encephalitis  My brain before and after encephalitis I noticed during my research of the brain that it is not typical for people to share their medical history, and I never thought I would be in this position. However, the diagnoses I had are interesting and […]

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Anti-NMDAR Autoimmune Encephalitis Lived Experience — Rachael M's Story

I don’t remember anything from my admission until fuzzy memories of my time in inpatient rehab. By the time I reached the hospital I was catatonic, and seizures were starting to take over, free fall which lasted for days, weeks, eventually resulting with me being placed on life support for months.

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Influenza Encephalitis Lived Experience — Audrey B's Story

By the next morning Audrey’s lethargy and vomiting continued and progressed to where she was completely obtunded, nonverbal and with rapid eye movements mimicking seizures. We were rushed back to the ER via ambulance where she received a full work up (CT, lumbar puncture, EEG, MRI, etc). She was diagnosed with influenza B encephalitis.

Read Story
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Full Event Archive

This section is intended for use only on the main Events page.

Encephalitis - a growing global threat : Global Policy Launch

Join us virtually (online) to the launch of the World Health Organization’s technical brief on Encephalitis. Dr Ava Easton, Chief Executive of Encephalitis International is thrilled to host the launch of the World Health Organization’s technical brief on Encephalitis. The event will feature a panel of experts including Dr Nicoline Schiess from the World Health […]

19 February 2025
Online
View Event
Images of participants in the Lisbon Half Marathon.

Lisbon Half Marathon

The EDP Lisbon Half Marathon forms part of Portugal’s biggest running event and is one of the races in the popular SuperHalfs Series. The route follows the shores of the River Tagus and crosses the iconic bridge, Ponte 25 de Abril, giving you unbeatable views of Lisbon.

9 March 2025
Lisbon, Portugal
View Event
Images of participants in Run Rome The Marathon.

Run Rome The Marathon

Run Rome The Marathon offers an unmatched route through history, culminating at Italy's world-famous Colosseum. Join 30,000 runners to take in the sights of Rome in the most spectacular fashion, with ambient temperatures and breath-taking views. 

16 March 2025
Rome, Italy
View Event

Anti-NMDAR Encephalitis Webinar - patient event (online)

Please note that this is an online event aimed at patients and their caregivers/families. Invited Speaker: Associate Professor Stacey Clardy Department of Neurology, University of Utah, Salt Lake City, Utah, US. The webinar will consist of a 30 minute presentation by Dr Stacey Clardy following by a 20 minute Q&A. There will be an opportunity […]

19 March 2025
Online
View Event
Images of participants in the Prague Half Marathon.

Prague Half Marathon

The Prague Half Marathon is an unforgettable race due to its stunning scenery, with landmarks including Prague Castle, the National Theatre, Vyšehrad Castle and the Rudolfinum Concert Hall. It is one of the races in the popular SuperHalfs Series.

5 April 2025
Prague, Czech Republic
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Images of participants in the Milano Marathon.

Milano Marathon

The Wizz Air Milano Marathon offers an amazing flat route for those looking to run from the Piazza del Duomo, through the extraordinary architecture of Milan. It's the perfect setting for a personal best too - known as the fastest marathon in Italy.

6 April 2025
Milan, Italy
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Images of participants in the London Landmarks Half Marathon.

London Landmarks Half Marathon

London Landmarks half marathon features Tower Bridge, Nelson's Column and Big Ben - the only half marathon to go through both the City of London and City of Westminster and one of the largest fundraising events in Europe.

6 April 2025
London, UK
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Images of participants in the Paris Marathon.

Paris Marathon

The Schneider Electric Marathon de Paris offers a unique opportunity to traverse this iconic French city and experience landmark sights like the Champs Elysées, the Bois de Vincennes, Notre Dame and the Arc de Triomphe.

13 April 2025
Paris, France
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Images of participants in the Big Sur International Marathon.

Big Sur International Marathon

Big Sur International Marathon is a point-to-point course run on scenic CA Highway 1 from Big Sur to Carmel in California. Towering redwoods, crashing waves, coastal mountains and verdant pastures are featured on this bucket list course.

27 April 2025
California, USA
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My Brain & Medicine 2025

My Brain & Medicine 2025 – Registration is now open (virtual event) Join us online for a patient event where we will be joined by a host of professional and lived experience speakers. The presentations are aimed at patients, carers and family members with an interest with encephalitis. Starting on Monday, April 28, 2025 at 1:00PM […]

28 April 2025
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Climate change, infectious diseases and encephalitis webinar - Health professional event (online)

Registration is now OPEN! If you are a health professional please join us on the 29 April 2025, at 2pm (BST) to find out more about  the impact of climate change on infectious diseases and encephalitis. If you are not able to join ‘live’, please register and a link to the recordings will be sent […]

29 April 2025
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Images of Edinburgh Marathon Festival participants and logo.

Edinburgh Marathon Festival

The Edinburgh Marathon Festival offers a varied programme of events - 5km, 10km, half marathon and full marathon, including the Hairy Haggis Team Relay option for 4 runners.

24 - 25 May 2025
Edinburgh, UK
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Images of participants in the Great North Run, including Encephalitis International supporters.

Great North Run

The AJ Bell Great North Run is the world’s biggest half marathon, with 60,000 runners taking on the 13.1 mile route from Newcastle to South Shields. 2025 places SOLD OUT - register your interest for 2026.

7 September 2025
Newcastle upon Tyne, UK
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Image of Thames Path Ultra Challenge participants.

Thames Path Ultra Challenge

Whether you choose to walk, jog or run - England’s most famous river provides a fantastic backdrop for an unforgettable Thames Path Ultra Challenge. Distance options include 100km, 75km, 50km, 25km and 10km.

13 September 2025
Putney Bridge, UK
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My Brain My Story 2025

Please note My Brain : My Story is a hybrid event (in-person and virtual via Zoom) We would love you to join us in York, England, – or virtually – at My Brain : My Story on Saturday 4 October 2025. This event is a hybrid event for anyone who wants to listen to the […]

4 October 2025
The Grand, Station Rise, York, YO1 6JD
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AJ Bell Great Scottish Run logo.

Great Scottish Run

The Great Scottish Run offers a half marathon and 10km option in the vibrant and friendly city of Glasgow. Urban architecture combines with green spaces and riverside views - a great way to explore this part of Scotland.

5 October 2025
Glasgow, UK
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Great South Run logo

Great South Run

The AJ Bell Great South Run is probably the world’s favourite 10 mile running event, with inspiring history, salty seaside air and glorious views across to the Isle of Wight, as you weave your way around Portsmouth and Southsea.

19 October 2025
Portsmouth, UK
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Images of participants in the Dublin Marathon.

Dublin Marathon

The Irish Life Dublin Marathon offers an unmissable opportunity to run through iconic landmarks like Phoenix Park, along the River Liffey, and past historic Georgian streets. With a relatively flat course and enthusiastic local support, it's a popular event with 22,000 runners.

26 October 2025
Dublin, Ireland
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Image Tough Mudder participants.

Tough Mudder

Tough Mudder creates hardcore obstacle courses designed to test your all around strength, stamina, and mental grit. Innovative courses combine running and a number of obstacles - featuring mud (lots of mud!), ice and 10,000 volts of electricity!

Various Dates / Locations, United Kingdom
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Ultra Challenge events - logo and participants.

Ultra Challenge - Walk, Jog, or Run

Whether along stunning coastlines, or trails through wonderful countryside, your Ultra Challenge® will be unforgettable. Walk, jog or run - take on a 10km, 25km, 50km 75km or even a 100km Ultra Challenge.

Various Dates / Locations, United Kingdom
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Inflatable 5k events - logo and participants.

Inflatable 5k - 2.5km, 5km, 10km, or 15km

A unique inflatable obstacle course you'll need to run, bounce, swing and slide along! Take part on your own or as part of a group with your family (suitable for kids 5 years and over!), friends or colleagues.

Various Dates / Locations, United Kingdom
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UK Bungee Club logo and bungee jump participants.

Bungee Jump

Are you brave enough?! Experience the thrill of a lifetime with an exhilarating bungee jump. Perfect for thrill seekers or those in search of an adrenaline challenge!

Various Dates / Locations, United Kingdom
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Cycling challenge participants.

Cycling Challenges

From 25km cycles to epic multi-day international rides, we have a range of cycling challenges to choose from. Get on your bike and support Encephalitis International!

Various Dates / Locations, United Kingdom
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Swimming challenge participants.

Swimming Challenges

Open water challenges - including the Great North Swim - and triathlon options to support Encephalitis International. Swim to show your support!

Various Dates / Locations, United Kingdom
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London - UK Challenges

Run, walk, cycle or take on a Tough Mudder - there is plenty of choice for challenge events in London to support Encephalitis International. Why not browse the options available and join our wonderful community of fundraisers?

London, UK
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Story Teasers

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Autoimmune Encephalitis Lived Experience - Ana and Jesus' Story

I have been a volunteer with Encephalitis International ever since, sharing our story and information about encephalitis whenever I have the opportunity. By sharing our story at the My Brain : My Story : My Family conference, I hope to help others feel as understood and reassured as I did two years ago, when I first discovered Encephalitis International.

Read Story
Steven's encephalitis story

Unknown Encephalitis Lived Experience - Steven's story of his mum

My journey took an unexpected turn when encephalitis struck my family, taking away my beloved mum. It was a devastating blow that changed my life in ways I never could have imagined. At the same time, I was learning my craft as a teacher, trying to support my students and navigate the complexities of the classroom, all while the world was in the grip of the Covid-19 pandemic.

Read Story

Seronegative Autoimmune Encephalitis Lived Experience — Matt's Story

Those two weeks were a blur I know only through stories from my family and doctors. I was tested for serious illnesses like EEE, West Nile, and Zika, all of which came back negative. Then things got even more frightening—I began losing vision and experiencing double vision, though I don’t remember this myself. My body was scanned for cancer, but thankfully, that came back clear too.

Read Story

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Dr Ava Easton

Chief Executive of Encephalitis International

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Phillippa Chapman

Deputy Chief Executive

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Alina Ellerington

Alina Ellerington

Director of Services

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Calum Goodwin

Calum Goodwin

Head of Partnerships & Giving Development

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Caroline Clarke

Finance Manager

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Emma Collins

Patient and Public Involvement Manager

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Jon Ainley

Support Line Manager

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Julie Welburn

Admin and Events Manager

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Jo Brooke

Trusts and Foundation Manager

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Poonam Mistry

Data Insights and CRM Manager

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Prav Prathapan

Senior Medical Writer

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Vicky Burgess

Admin Assistant

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Suhayl Kassam

International Development Manager

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Page Created: 22 November 2023
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