Celebrating our volunteers
A year in the life of our Team Encephalitis volunteers
By Alex Amareia, Digital Outreach and Volunteer Manager, Encephalitis International
As part of Volunteers’ Week 2026, we want to take a moment to celebrate the incredible people who give their time, energy, skills, and passion to support our community.
Over the last year, our Team Encephalitis volunteers have contributed in so many different ways – from speaking at events and supporting peer groups, to reviewing resources, raising awareness, testing new tools, fundraising, taking part in research and helping people feel less alone.
Every contribution matters, and together our volunteers have made a huge impact.
In the past year, with support from our volunteers, we have:
- Published 8 new factsheets and 2 guides
- Supported 501 people from 17 countries through the peer support groups
- Shared stories and podcasts with over 140,000 people on our YouTube channel
- Represented Encephalitis International at 9 events or information stands
- Supported over 2o research projects
- Launched the new F.L.A.M.E.S resources
- Discussed important topics with up to 881 members on HealthUnlocked
Highlights from the Year
Here are a few highlights from the last year:
May 2026
May was a busy month for volunteering and awareness raising. Paul and Pauline represented us for the third time at the National Head Injury Conference in Glasgow, helping to connect with others in the brain injury community.
Also in May, Evie shared her lived experience story of anti-NMDAR encephalitis and talked about her support group role in a special volunteering episode of the Encephalitis Podcast.
Paul and Pauline at the National Head Injury conference, May 2026
March 2026
March saw Team Encephalitis supporting several important projects and awareness activities.
12 volunteers reviewed the Challenge of Caring factsheet, helping to ensure the information was accurate, useful, and accessible. This reviewed factsheet will be available to read soon in our library of resources Factsheets | Encephalitis International
Rachel attended the Innovation After Injury Conference, representing the lived experience voice within important discussions around recovery and rehabilitation.
Rachel said, ‘It was absolutely fascinating and I met some incredible people and hopefully made some good contacts for Encephalitis International.’
Doug took part in several media interviews sharing his story to help raise awareness of F.L.A.M.E.S., including:
- A local CBS/KDKA News interview
- A Pittsburgh Post Gazette newspaper interview
- A Men’s Journal magazine interview
February 2026
February is an important month for us as it’s World Encephalitis Day (WED) on the 22nd so there was a wide range of activities held across the world.
Diane and Sarah supported the launch of the new F.L.A.M.E.S. acronym by courageously sharing their experience of encephalitis symptoms on film.
Nick flew all the way from Australia to America (!) to attend the World Encephalitis Day Alliance conference in Colorado to listen to expert speakers and hear inspirational stories.
Megan supported the World Encephalitis Day King’s College information stand, and a group of volunteers, staff and community members attended the Piccadilly Circus meet-up to see the launch of the F.L.A.M.E.S. billboards.
F.L.A.M.E.S. billboard Piccadilly Circus, London
January 2026
In January, our Support Group Volunteers, started a new year continuing to provide an important space for people to connect and support one another in our Online Peer Support Groups.
Ana read and reviewed the “Ratgeber Autoimmune Enzephalitis” (2025) by Prof. Markus Krämer and Prof. Frank Leypoldt book in German, helping to make information more accessible to wider audiences.
October 2025
Doug and Sandeep shared their story at the My Brain; My Story networking event in York.
Rhys and Diane helped us to create a presentation which will enable children and young people to share their story with teachers and peers enabling them to receive more support in school.
Stephen contributed valuable work on YouTube by adding hashtags and end screens to our information, podcast and story videos which helps to improve online reach and engagement.
September 2025
Rachael shared her lived experience story of anti-NMDAR encephalitis at the My Brain & Medicine event in Colombia.
August 2025
Nick raised over 8,000AUD when he took on the City2Surf challenge as a fundraiser for Encephalitis International an amazing achievement and contribution.
Nick after he completed his City2surf
Thank You
To every Team Encephalitis volunteer who has contributed over the last year – thank you. There are so many more activities that took place and we are incredibly grateful for them all.
Whether you attended an event, shared your story, reviewed resources, supported peer groups, tested new ideas, fundraised, or helped behind the scenes, your time and commitment make a real difference.
You are at the heart of what we do, and we are incredibly grateful for everything you bring to our community.
Happy Volunteers’ Week 2026!
Published June 2026