January saw the launch of new teaching materials on health literacy and meningitis awareness, co-produced with the PSHE Association and Meningitis Now supporter, Sue Theodossiadis, in memory of her son Alex. The materials are designed for use in sixth-forms and have already proven popular. The launch was covered in the national press, and Sue and I even appeared on BBC Breakfast!
Sadly, the winter months often bring tragedy. In February, we heard about the sad death of young Jaxon Knowles from Rotherham. Friends and family of Jaxon’s parents rallied to their call to raise more awareness of meningitis and have helped to raise an incredible £100k towards our work.
Cases such as Jaxon’s therefore drive our work to raise awareness of disease and how to prevent it through vaccination. Between January and March 2025, we worked with partners including NHS England, the UK Health Security Agency, pharmaceutical company GSK, and charities MRF and a Life for a Cure on a collaborative social media awareness campaign. By pooling our resources and working together, this campaign generated an impressive 30 million social media views, a reach of 8 million people, and 15 thousand website visitors.
In March, we refurbished our offices with the generous support of Abbey Business Interiors. Not only did this create a new space that was modern and light, but we also reduced our office costs by a third, saving over £120k over the next five years. When you’re running a charity, every little helps.
April was a busy month. We were delighted to welcome Sue Rogers to the team as our new Director of Support, Information and Research. But above all, this month saw the launch of our ‘No Plan B for MenB’ campaign which calls for 1) the MenB vaccination to be given to all those at most risk of disease, 2) a MenB booster programme to protect adolescents by 2030, and 3) the availability of MenB vaccination on the high street at a fair price. It was brilliant to see ASDA Pharmacy launch their MenB vaccination service as part of this.
We also visited UCL’s Department of Respiratory Medicine, where Professors Gerry Brown and Brendan Wren talked about the findings of a Meningitis Now funded pneumococcal vaccine project which could significantly reduce the cost of producing of future vaccines. This was a hugely impressive and optimistic visit!
Photo credit: Slyvie Pope Photography
In May, we hosted our annual Community Ambassador Day in Stroud, bringing together our fantastic Ambassadors from across the UK. We ran workshops on subjects such as the latest disease knowledge and began preparations for celebrating Meningitis Now’s 40th anniversary in 2026. The work of our volunteers, Ambassadors and all our supporters will loom large in these activities – watch this space in the coming weeks and months.
Sadly, in May the charity also had to say goodbye to three members of staff through redundancy. 2025 was a difficult year from an economic point of view, and Meningitis Now is not immune from the financial challenges this creates.
In June, I had a trip to Edinburgh, this time fundraising in an event called ‘Race the Tram’. This involved, well, racing a tram across Edinburgh! It was as daft and as fun as it sounds.
In July, the government published the much-awaited Ten Year Health Plan, which proposes a shift from ‘sickness to prevention’ as one of its key aims. It also included other progressive ideas, such as using the NHS app to enable people to access their vaccine records and an important commitment to ‘work with…civil society, voluntary organisations and community groups to support the public trust in vaccines needed to restore childhood immunisation rates. We support these commitments and plan to work with government to see them delivered.
In fact, it was a busy summer of public affairs activity. Amongst other things, I spoke at the NHS Confederation Conference on ‘taking prevention from rhetoric to reality, at Health Innovation West of England on ‘Martha’s Rule in action’, at an ABPI event on diversity and inclusivity in clinical trials, and an AMRC workshop on ‘small but mighty’ research charities.
A personal highlight in August was being witness to Lyndon Longhorne’s world record-breaking Ironman Triathlon in Liverpool. This involved swimming 3.8km, cycling 112 miles, and then completing a wheelchair marathon (26.2 miles). All in the unbelievable time of 23 hours, 59 minutes and 30 seconds! The remarkable thing is that Lyndon is a quadruple amputee, having survived meningitis when he was only 8 months old. He had an excellent support team under the leadership of Dr Nic Robinson of Liverpool John Moores University. A brilliant achievement.
September brought mixed feelings. We’d launched our customary student meningitis awareness campaign in August, and media interest continued into September following the launch of our hard-hitting new film featuring Eliana Shaw-Lothian who had survived meningitis in her first year at university. But, at the same time, an inquest in Nottingham highlighted the failures of care that led to the sad death of 15-year old Zara Cheesman. According to the coroner, there were 'gross failings' on the part of the hospital in Nottingham and a 'lack of listening' from the ambulance crew as to what Zara's parents were telling them. A desperately sad case and a topic we will focus on in future.
The last weekend of September saw the Meningitis Now annual Five Valleys Walk, which this year saw over 1600 walkers take on the 21-mile route and raise over £50k!
World Meningitis Day took place in October, drawing attention to all the fantastic work undertaken by members of CoMO, the global Confederation of Meningitis Organisations. For Meningitis Now, October and the autumn months also saw a series of hugely valued support events for people and families. A Forever Weekend in Northampton, Believe & Achieve events for young people aged 11-25 years, and online workshops covering topics such as living with brain injury. It’s incredible to see the impact these kinds of events can have as people seek to rebuild their lives following meningitis.
We also learned of the death at university of Megan Draper and, together with her parents, we spoke to the media about the importance of greater awareness of the availability of private vaccines and the change we hope to see with our ‘No Plan B for MenB’ campaign.
I also attended two parliamentary roundtables in October and November. I’m a great believer in the importance of cross-sector working and it was a privilege to be part of these discussions involving parliamentarians, the NHS and UKHSA, professional and trade bodies, industry and charities. I’m looking forward to seeing progress beyond these initial discussions on the ‘value of vaccines’ and vaccine access and uptake.
Meningitis Now’s Christmas Celebration Concert took place in Gloucester Cathedral in late November and, as always, it was majestic and uplifting occasion. Here, Alex and Claire spoke movingly about losing their daughter Mia to meningitis. Only weeks later, in December, it was similarly moving to hear Daksha and Dilip Mistry address the congregation at St Paul’s Church, Covent Garden, at our London Christmas Carol Concert. Daksha and Dilip lost their daughter Bhavini to meningitis in 1988 and have supported Meningitis Now since then.
Such incredible support is, in many ways, the hallmark of our charity. In that respect, you could say that it is not words that characterise 2025, but people. And as I look back across the last 12 months, I can honestly say that I have been moved, inspired and uplifted by people who are part of the Meningitis Now family. People such as Graeme and Gail Burridge who invited me to their fundraising curry night in memory of their daughter Katherine, or Lynette Adjei and family who invited me to be part of their celebration evening some 25 years after their son Ato survived pneumococcal meningitis.
Sadly, in 2025 we also said goodbye to patrons and good friends to Meningitis Now, such as patron and footballer Denis Law, and novelists Jilly Cooper and Joanna Trollope. As 2025 comes to an end, our thoughts are with their families and friends.
I therefore look forward to 2026 with a sense of both anticipation and hope. Forty years will have passed since Meningitis Now was first established in Stroud as a parent support group, then becoming the Meningitis Trust, then merging with Meningitis UK to become Meningitis Now. A lot has been achieved in that time. I hope that you, like me, are looking forward to celebrating this important anniversary.
