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Event Teasers

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Illustration of two scientists and a human brain

My Brain & Medicine, Sweden

Please note this is a FREE in-person event only for patients diagnosed with encephalitis, their family members and caregivers. Venue: Elite Hotel Carolina Tower, Eugeniavägen 6, 171 64, Stockholm, Sweden  Room: Wilhelm Röntgen Hall Date:  Monday 26 January 2026 – 12.30 – 18.30hrs (CEST) Most of this event will be presented in Swedish and the […]

26 January 2026
Sweden
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World Encephalitis Day Alliance Conference Empowering Hope 2026

Please note that this event is an in person event taking place in Denver, United States Overview Join the World Encephalitis Day Alliance for a day of hope, empowerment, and unity at the World Encephalitis Day Alliance Conference 2026 – you won’t want to miss it! Welcome to the World Encephalitis Day Alliance Conference, Empowering […]

20 - 22 February 2026
Embassy Suites by Hilton Denver International Airport
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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 across the weekend, with kids races, 5km, 10km, half marathon and full marathon, including the Hairy Haggis Team Relay option for 4 runners.

23 - 24 May 2026
Edinburgh, UK
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Full Story Archive

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

Viral Encephalitis - Nicholas' Story - 5 years on

Five years on for Nicolas's mum. Sarah talks about her son's battle with the after effects of viral encephalitis. Nicolas fought for over 20 years before losing his life.

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Herpes Simplex Encephalitis Lived Experience - Natasha's Story

Natasha had encephalitis when she was just two years old. Here, she shares examples of her lived experience including fatigue and changes to her co-ordination.

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A photo of Ross and his dad. Michele describes Ross' lived experience of Anti-NMDA Receptor Encephalitis.

Anti-NMDAR Encephalitis Lived Experience - Michele's Story - Part Three

This is Part 3 of Michele sharing her son Ross’ lived experience of Anti-NMDAR Encephalitis. This includes the struggles with the care system, finally getting a diagnosis, treatment and life since treatment.

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A picture of the family including Ross and Michele. Michele describes Ross' lived experience of Anti-NMDA Receptor Encephalitis.

Anti-NMDAR Encephalitis Lived Experience - Michele's Story - Part Two

This is Part 2 of Michele sharing her son Ross’ lived experience of Anti-NMDAR Encephalitis. This includes the struggles to get a diagnosis.

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A photo of Michele and Ross. Michele shares Ross' lived experience of Anti-NMDA Receptor Encephalitis.

Anti-NMDAR Encephalitis Lived Experience - Michele's Story - Part One

Michele shares her son Ross' lived experience of Anti-NMDAR Encephalitis. This includes the initial symptoms and the effect on Ross' family.

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Martin in a flower field. He describes his Herpes Simplex Virus Lived Experience. He discusses symptoms, diagnosis and how his life has changed since having encephalitis.

Herpes Simplex Virus Lived Experience - Martin's Story

This is Martin's Herpes Simplex Virus lived experience. Martin discusses symptoms, diagnosis and how his life has changed since having encephalitis.

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Mark with his rugby team. Mark describes his Epstein Bar Virus Encephalitis lived experience.

Epstein Bar Virus Encephalitis Lived Experience - Mark's Story

Mark describes his Epstein Bar Virus Encephalitis lived experience. This includes diagnosis and how he is coping now.

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Anti-NMDA Encephalitis Lived Experience - Maddi's Story

Anti-NMDA Encephalitis Lived Experience - Maddi's Story

Tricia talks about her daughter Maddi's diagnosis of anti-NMDA receptor antibody encephalitis. About how she went from a 'typical' 5 year old to showing signs of anger and aggression and the struggles that came with it.

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NMDA Autoimmune Encephalitis Lived Experience - Macy's Story

Anti-NMDAR Autoimmune Encephalitis - Macy's Story

Macy talks about her lived experience of NMDA Autoimmune Encephalitis and how she fought to maintain her joy of running.

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Autoimmune Limbic Encephalitis Lived Experience - Lorna's Story

Lorna talks about her lived experience and induced coma as a result of unknown autoimmune encephalitis and limbic encephalitis.

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LGi1 Autoimmune Encephalitis Lived Experience - Lisa's Story

Lisa talks about her lived experience of autoimmune encephalitis which, in her case, cased seizures, mobility issues, problems with cognitive function such as short term memory loss and aphasia.

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Encéphalite auto-immune vécue - L’histoire d’Elisabeth

Elisabeth partage son expérience d’un diagnostic d’encéphalite auto-immune. La confusion que cela a causée et comment et comment elle a passé Noël, le Nouvel An et son 20e anniversaire à l’hôpital.

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Viral Encephalitis Lived Experience - Ken's Story

Ken, who was diagnosed at just 2 years old, talks about his experience of viral encephalitis and growing up with very little information in the 60's and 70's.

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Anti-NMDAR Encephalitis Lived Experience - Kelly's Story

Kelly talks about her experience of having meningococcal encephalitis as a seven month old and then 3 subsequent experiences of encephalitis including Anti-NMDAR encephalitis.

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Katie talks about her experience of Mengioencephilitis below:

Mengioencephilitis Live Experience - Katie's Story

Katie talks about her experience of Mengioencephilitis, that causes flu like symptoms, that she had while she was working for the NHS.

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Katharina talks about her experience of Meningoencephalitis

Meningoencephalitis Live Experience - Katharina's Story

Katharina talks about her experience of Meningoencephalitis which can cause flu like symptoms. She tells her story from the memory of others and how her life has changed as a result of encephalitis.

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Anti-NMDR Encephalitis Lived Experience - Juliana's Story

Anti-NMDR Encephalitis Lived Experience - Juliana's Story

Juliana talks about her lived experience of Anti-NMDR encephalitis which she had when she was just 14 years old and how her live changed as a result.

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Herpes Simplex Encephalitis Lived Experience - Joshua's Story

Herpes Simplex Encephalitis Lived Experience - Joshua's Story

Joshua shares his experience of panic attacks, anxiety and fatigue as a result of his herpes simplex encephalitis diagnosis.

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Meningoencephalitis Lived Experience - Jim's Story

Meningoencephalitis Lived Experience - Jim's Story

The type of encephalitis that I developed was one born of stress. It manifested itself as shingles, and instead of just causing a rash and impacting me physically, it raced up my spine and took my brain by force. Not just the temporal lobe, but also the lining of the brain too. No one can say why other than stress, and there is no single trigger point that can be identified at present. All that can be said is that my brain, my mind and who I once was had reached their breaking point.

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Meningoencephalitis Lived Experience - Jeremy's Story

Meningoencephalitis Lived Experience - Jeremy's Story

Jeremy shares his story of waking from a 10 day coma to a diagnosis of amoebic meningoencephalitis, a type of infectious encephalitis.

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Viral Encephalitis Lived Experience - Janet's Story

Viral Encephalitis - Janet's Story told by husband, Peter

Janet's husband, Peter, recalls their experience of encephalitis when Janet was diagnosed in 2007 with viral encephalitis. She later passed away in 2018.

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Autoimmune Encephalitis Lived Experience - James' Story

Limbic Autoimmune Encephalitis Lived Experience - James' Story

Sue talks about her experience of James being diagnosed with limbic autoimmune encephalitis and how there were no warning signs. Read about his diagnosis and recovery.

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Autoimmune Encephalitis Lived Experience - Jackie's Story

Autoimmune Encephalitis Lived Experience - Jackie's Story

This is the article that Jackie wrote about her experience of encephalitis for The Gavel, the quarterly magazine of the North Dakota State Bar Association. She talks about her diagnosis or autoimmune encephalitis.

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Viral Encephalitis - Nicholas' story told by mum, Sarah

At the age of 16 years, Nicholas was struck down by a completely random virus, which caused encephalitis and subsequent brain damage. He was in intensive care for a long while and had to learn to walk, talk, eat, read, and basically live, all over again. Nicholas’ mental age never fully recovered, and he became the perpetual teenager in his thoughts and actions.

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Full Event Archive

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

Illustration of two scientists and a human brain

My Brain & Medicine, Sweden

Please note this is a FREE in-person event only for patients diagnosed with encephalitis, their family members and caregivers. Venue: Elite Hotel Carolina Tower, Eugeniavägen 6, 171 64, Stockholm, Sweden  Room: Wilhelm Röntgen Hall Date:  Monday 26 January 2026 – 12.30 – 18.30hrs (CEST) Most of this event will be presented in Swedish and the […]

26 January 2026
Sweden
View Event

World Encephalitis Day Alliance Conference Empowering Hope 2026

Please note that this event is an in person event taking place in Denver, United States Overview Join the World Encephalitis Day Alliance for a day of hope, empowerment, and unity at the World Encephalitis Day Alliance Conference 2026 – you won’t want to miss it! Welcome to the World Encephalitis Day Alliance Conference, Empowering […]

20 - 22 February 2026
Embassy Suites by Hilton Denver International Airport
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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 across the weekend, with kids races, 5km, 10km, half marathon and full marathon, including the Hairy Haggis Team Relay option for 4 runners.

23 - 24 May 2026
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. Register your interest for 2026!

13 September 2026
Newcastle upon Tyne, UK
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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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Image of challenge participants supporting Encephalitis International around the UK.

UK Challenges - Run, Tough Mudder, Bungee

Want to run your first 5k? Or how about the challenge of a marathon or obstacle race? There are plenty of challenge options in the UK to support us!

Various Dates / Locations, United Kingdom
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Image of challenge participants supporting Encephalitis International around the world.

Global Running Challenges

Sight-seeing and running combine brilliantly for these global challenge events. Run through must-see cities and past iconic landmarks whilst supporting Encephalitis International!

Various Dates / Locations, Worldwide
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Cycling challenge participants.

Cycling Challenges

From short cycles to epic multi-day international rides, there is a huge range of cycling challenges to choose from. Get on your bike and support Encephalitis International!

Various Dates / Locations, Europe
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Images of participants and the logos for the SuperHalfs Series.

SuperHalfs Series

The SuperHalfs Series brings together six epic destination half marathons which runners complete to secure their SuperMedal and a place in the SuperHalfs Hall of Fame. The events take place in Berlin, Cardiff, Copenhagen, Lisbon, Prague and Valencia. What an awesome challenge to take on in support of Encephalitis International!

Various Dates / Locations, Europe
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Story Teasers

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LGi1 Autoimmune Encephalitis - Graeme's Story

Graeme shares his lived experience of LGi1 autoimmune encephalitis. Graeme shares his experience of developing sudden, involuntary spasms in early 2022 that gradually worsened and disrupted his daily life. Despite repeated medical consultations, his symptoms were misdiagnosed or overlooked for nearly two years. The episodes, later identified as dystonic seizures, were triggered by stress, fatigue, and everyday activities.

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Herpes Simplex Virus Encephalitis - Adey's Story

What came next was a horror story and the experience of physical, mental and emotional torture. My symptoms intensified. Confusion, mental fog, extreme fatigue, severe headache, non stop cyclical vomiting, unbearable abdominal pain, my throat inflamed now unable to swallow my saliva without intense burning, and excruciating pain with touch that ran through my body like fire when sensory neurons/pathways were glitched (hyperesthesia/allodynia).

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Acute Disseminated Encephalomyelitis (ADEM) - Rosie's Story

Rosie shares her story of growing up after developing Acute Disseminated Encephalomyelitis (ADEM) at the age of six. After suddenly collapsing at school and spending time in intensive care, she faced significant physical challenges, particularly with balance, strength, and walking. Through rehabilitation, family support, and patient-centered care, Rosie gradually regained mobility and confidence.

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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

Director of Partnerships and Fundraising

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Caroline Clark

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

Prav Prathapan

Senior Medical Writer

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Vicky Burgess

Fundraising and Finance Admin Manager

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Alex Amareia

Digital Outreach and Volunteer Manager

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Ally Phillips

Personal Assistant to the CEO

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Natalie Herbert

Administration Executive

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Leisa Sherry

Graphic Designer

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Kirsty Holtby

Fundraising Manager

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