Winter 2026 issue 5
Meningitis Matters Making a difference, every day
Student campaign How our support makes a difference 40th Anniversary Appeal
Welcome to Meningitis Matters A warm welcome to our newsletter, helping you stay in touch with everything that’s been happening at Meningitis Now over recent months and what’s coming up. It’s been a busy and varied few months. The end of September saw our annual Five Valleys Walk, one of our favourite events of the year. Over 1,600 of you took to the Stroud valleys on the 21-mile route. A big thank you to those who took part, raising over £49,000 towards our ongoing work, and to the volunteer bus drivers at Stagecoach West Ltd, who provided lifts for our walkers. We’re busy planning this year’s walk (Sunday 27 September), so pop it in the diary and join us if you can – it’s a lovely day out and a great way to commemorate our 40th anniversary, which falls this year. We’ve come a long way in that time and we’ll be reflecting on this journey with our ‘Stories of Hope’ exhibition. The exhibition will feature portraits and stories from supporters we’ve worked with over the years – not to be missed. A key highlight for me this summer was playing a small part in Lyndon Longhorne’s incredible 24-hour Ironman challenge. I cycled 60 miles with Lyndon as part of his 112-mile cycle on recumbent bike. He also completed a 26mile wheelchair marathon and a 2.4-mile open water swim. The emotion of watching Lyndon complete his epic challenge with 30 seconds to spare will remain with me forever.
I’m also busy preparing for our Sahara Trek, which takes place this March. This is our first overseas trek since 2016, and I’ll be joined on the dunes by a group of supporters, including our very own President, Lisa Snowdon. Wish us luck! With our Forever Weekend and Family Days, Christmas Concerts in Gloucester and London, a successful student campaign, a planned revamp of our Head Office remembrance garden, a tractor run to mark World Meningitis Day, and our Celebrity Ambassador Rosie Galligan being in the England Women’s Rugby World Cup winning team – well done Rosie – last year was a full and busy year for us. So, I’m sure 2026 will be no different! I’m pleased to share all of these stories and more with you in the following pages, and to bring you along as we take our next steps towards a future where no one in the UK dies of meningitis, and everyone affected gets the support they need. Thank you as always for everything you’re doing to help us move ever closer to this ambitious target.
Dr Tom Nutt,
Chief Executive, Meningitis Now
Front cover image (credit Barron Media) showing Lyndon Longhorne’s Ironman Challenge. 1
40th Anniversary Appeal This year marks a remarkable milestone for Meningitis Now – our 40th anniversary. Four decades ago, families in Gloucestershire came together, united by the devastating impact of meningitis, to form the UK’s first meningitis charity. Since then, we’ve grown into the leading national organisation fighting back against this brutal disease, offering free support to everyone affected across the UK. As we begin this special year, we’re inviting you to mark the occasion with a monthly gift of £4, £14 or £40. These regular donations are more than symbolic – they give us the confidence to plan ahead, knowing we can continue to be here for everyone who needs us. Over the years, we’ve stood beside thousands of families, helping them navigate the trauma and life-changing after-effects of meningitis. From pioneering research and vaccine campaigns, to emotional, practical and financial support, our mission has remained constant: To save lives and rebuild futures.
Help us celebrate our 40th year by making a monthly gift.
Click here to donate
We know we make a difference. One parent told us:
Meningitis Now has been a lifeline to our family and stood beside us throughout the journey we now find ourselves on. The impact they have had on our lives and the lives of others is breathtaking. We really would be lost without their support, advice and knowledge of meningitis. Scott, father of Noa-Rose, who contracted meningitis aged three.
With 22 people continuing to be affected by meningitis every day, our work is far from over. Your support helps us reach communities, raise awareness and ensure that no one faces meningitis alone. As we celebrate 40 years of impact, please consider setting up a monthly gift or making a one-off gift using the enclosed form. It’s a powerful way to honour our past and invest in our future – helping us continue to save lives and rebuild futures for generations to come. 2
Student campaign Radio Day 2025 In August, we hosted our annual Radio Day. Our CEO, Tom, was joined by Michelle Bresnahan, who founded ‘A Life for a Cure’ after she lost her 16-year-old son Ryan to MenB in 2010, and Eliana Shaw-Lothian, who had meningitis in her first year of university in 2023. They met at On Air Studios in London to record radio interviews across a number of outlets to promote our student campaign. The interviews urged young people to recognise the signs of meningitis and to ‘sound the alarm’ if someone is ill and getting worse. The goal was to highlight the increased risk for first-year students, encourage vaccination checks – and ensure parents, staff, and students know when to act.
Total stations: 188 Total reach: 98,458,596 Total airtime: 20+ hours
Eliana (left) Michelle (middle) and Tom 3
No Plan B for MenB
As part of our MenB awareness campaign ‘No Plan B for MenB’, we launched a petition for those people who believe, as we do, that a MenB vaccination should be made available to those who are most vulnerable to contracting the disease. The petition currently stands at over 4,500 signatures, demonstrating how important this matter is to people who understand the very real risk MenB poses. One of the key at-risk groups of MenB are teenagers and young adults. Cases of MenB, the most common cause of bacterial meningitis in the UK, are on the rise – as shown by the recent news stories of students losing their lives to meningitis and latest statistics from the UKHSA. There were 313 cases in 2024/5 compared to 301 in the previous year. Whilst a private MenB vaccine is available, it is not widely known about and its cost puts it out of reach for many people. That’s why we will continue to call for the MenB vaccine to be available for young people on the NHS and to raise awareness of the risks of MenB.
Three short films for sixth forms Alongside our awareness film, we have launched a further three short films featuring Becca, Leo and Ben, who all contracted meningitis whilst at university. The videos will be shown to students at sixth form and university to raise awareness of the importance of acting fast if someone is ill and getting worse. It is thanks to the quick thinking of friends at university that Becca, Leo and Ben are here to share their stories.
Leo’s story Leo had a severe headache and went home to rest. His girlfriend later told him that he had started to send illegible texts and, when she decided to phone him, she could barely understand him. She called an ambulance. By the time the ambulance arrived, Leo had passed out. He was rushed to hospital, where a lumbar puncture confirmed bacterial meningitis. The doctors told him that he arrived at hospital just in time. Ben’s story
Becca and Ben have recently become Meningitis Now Ambassadors and were able to share their experiences with each other and Leo in person for the first time on the day of filming. Becca’s story When Becca started vomiting and got progressively worse, her friend, Niamh, called 111, who sent an ambulance. A few hours later, Becca was in intensive care in an induced coma. She had meningococcal septicaemia. Becca had to have both of her legs below the knee and fingers on both hands amputated. She spent a total of four months in hospital. Becca has had a hand transplant that has been transformational – she can feel sensation in the hand transplant, like warmth, cold and some textures.
Ben thought he had a hangover. It wasn’t until his flatmates found him on his bedroom floor that they realised how poorly he was. They called an ambulance and, when Ben couldn’t tell the paramedics his own name, he was blue-lighted to the nearest hospital. If Ben’s flatmates hadn’t realised that something was wrong and called for help, likely Ben wouldn’t be here today. You can watch the full videos on our website now.
Meningitis Now are grateful to have received a grant from GSK to fund these videos, although GSK have had no input into their content. 4
Kindly supported by:
Our Helpline is a lifeline Our support team provides a lifeline for thousands of people and their families each year. Our nurse-led Helpline, accessed by telephone, email and social media was a key touchpoint for families experiencing meningitis.
You can access the Helpline by:
During 2024-25, we had 1,738 people contact our nurse-led Helpline. Of these, 1,269 were first-time callers.
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The people we support via Helpline often require several weeks of support, advice and guidance before they have the information and confidence necessary to navigate their journey or to access our wider range of support – including one-to-one personalised support with our community team across the UK.
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Phone: 0808 80 10 388 (9am-4pm Monday - Thursday and 9am-1pm Friday) Email: helpline@meningitisnow.org. Emails are answered during office hours only Social media: Via Facebook, Twitter, Linkedin, TikTok and Instagram. You can send us a private message with the subject line ‘Helpline’. Messages are answered during office hours only. We have access to a telephone interpreting service in over 240 languages.
Patient Organisations Takeover event Caroline and Sue from our support team were invited to participate in a Patient Organisations Takeover event hosted by Pfizer. They were able to showcase the work we do and to raise awareness of the disease alongside twenty other organisations. Staff teams and over 100 graduates and internship students were also invited to the showcase, giving us a great opportunity to inform, educate and share resources and information. Caroline and Sue’s presentation on our ‘No Plan B for MenB’ campaign encouraged people to sign our petition and dispelled the myth that only babies get meningitis. Signs and symptoms cards were also given out. 5
Sue said, “It was brilliant to talk with so many young people early in their journey of science, all of whom had such passion and motivation, which was totally inspiring and gave real hope for the future of medicine and vaccines.”
Forever Weekend 2025 We held our latest Forever Weekend at Sedgebrook Hall, Northampton. Families sadly bereaved by meningitis had an opportunity to meet with others in the same position.
We were privileged to be able to welcome a multi-award-winning author, Clare Mackintosh, who openly spoke about her grief of losing her baby to meningitis.
Not only do these weekends help to form connections and friendships but they give people the chance to learn about grief and understand the emotional and physical symptoms they experience.
There were creative writing and aromatherapy workshops, where we aimed to help people learn a little more about how different smells can help them feel more relaxed or energised, and how the power of writing can aid them through their grief journey. Feedback from participants inlucded:
We offered workshops and experiences that people may not think to try themselves, as well as a safe environment for everyone to remember their loved one.
I feel stronger to face the world that will never be the same again. I came away feeling less alone and really enjoyed the venue and evening meal. It was great having all the Meningitis Now support staff to chat to, who are all so kind and empathetic. I miss talking about my loved one, and it was a great opportunity to do just that. Thank you so much for allowing me to come and experience this event.
Northern Ireland Family Day 2026 Our next Family Day is being held at Clip ‘n Climb, Belfast, the popular indoor climbing activity centre and escape rooms, on 28 February, 10-3.30pm. The day offers a chance to connect with other families affected by meningitis and get involved with fun and exhilarating experiences. Come along and join in with climbing challenges – providing fun and excitement, whilst also ensuring a safe, secure and accessible experience. Families will then have an opportunity to enter the escape rooms to test their problem-solving skills. This event is free for families who have an experience of meningitis and have children up to 16 years old. It’s a fantastic opportunity to give children the chance to be children and
parents the chance to meet other families who understand how difficult life after meningitis can be. Our support team will be on hand to offer support and share more about the ways Meningitis Now can support you. Refreshments and lunch are provided, and the Clip ‘n Climb is fully accessible for all abilities. If you are interested in attending, please fill in the form on the Northern Ireland Family Day webpage on our website or email Community Support Officer, Jennifer Todd, JenniferT@meningitisnow.org. 6
Volunteers raise student awareness Our volunteers are an essential part of the success of our annual student campaign. With volunteer support, we can be face-to-face with students as they begin their journey in higher education. Our volunteers offer talks to colleges and sixth forms, which we know is an important moment to capture students’ attention about the signs and symptoms of meningitis before they start university and their risk of contracting the disease increases. The volunteer team also man stalls at university freshers’ fairs across the country, delivering key messages to students in their first few weeks of university, when socialising or meeting new friends can often take precedent. This year, the volunteer team held 27 awareness stands and dedicated over 200 hours to raising awareness amongst this at-risk group.
Thank you once again to everyone who’s been involved.
Lesley Chandler-Clare (left) and Isa Walker (right) at Leeds University of Law
This Autumn, we have been able to run more stalls than usual here in Leeds. We had enough volunteers not just to stand behind a stall but to walk around talking to students who perhaps wouldn’t have come over to talk to us. Many students hadn’t heard of meningitis and were very keen to find out more. We gave out forms for students to fill in if they hadn’t already signed up with a GP. Having more of us there meant that we were able to spend more time with some of the more anxious students. They have such a lot to deal with in these early weeks in a new county. Volunteer Lesley Chandler-Clare
If you want to make a difference in the fight against meningitis, we would be thrilled to have you on the team. Find out more about our volunteering opportunities by contacting us at volunteering@meningitisnow.org 7
Lottie Grimwood (left) and Amy Stevens (right) at Churchill College in Cambridge
Long-time supporter and volunteer Kate Speirs has given four talks at local sixth forms so far this academic year. She said:
Putting the men in meningitis Giving talks on meningitis to sixth form students is fun and rewarding, even though the subject matter is serious. All questions are good, as they’re a great opportunity to engage with the audience. I have been told by numerous parents and schools that the talks have generated a lot of discussion and have resulted in many students getting the private MenB vaccine. It is most rewarding to know that people are taking the facts on board and, in many cases, are taking action to protect themselves further against meningitis.
A new men’s support group has been set up by two of our male volunteers who have been left with long-term aftereffects from meningitis. It will be a place for men to talk about their illness and recovery in a friendly and supportive environment, with other men who understand how debilitating it can be. The group will have a WhatsApp chat, as well as a dedicated Facebook page. It will be run by Ashton Parry and Augustine Joseph (pictured above), and supported by Meningitis Now. We hope to have this group up and running early next year. Keep an eye out on our socials for an update. 8
£1 a week Kick off the New Year with a chance to win big! Start 2026 with a little extra excitement! For just £1 a week, you could win our top prize of £25,000 in the Meningitis Now Weekly Lottery – or one of 36 other guaranteed cash prizes. Playing is simple: Pick your six lucky numbers and get ready for the Friday draw – we’ll tell you if it’s your lucky week! Every Friday, there’s a chance of winning: • £25,000 grand prize • £1,000 second prize • 35 runner-up prizes from £20 to £5
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2
to play
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It’s simple to do and is an affordable contribution for us. I didn’t imagine I might actually win! Charlotte
Not only could you start the year with a win, but you’ll also be helping us fight meningitis and support families across the UK. Make 2026 your lucky year!
Sign up today at MeningitisNow.affinitylottery.org.uk and read full T&Cs.
How Gifts in Wills are helping fund vital research At the University of Bristol, PhD student Mia Dierks Treece and Dr Darryl Hill are leading a groundbreaking four-year study into meningococcal meningitis. Their research could transform how we fight meningitis in the future. By understanding how the bacteria survive and spread through the air, their discoveries could help develop new vaccines, life-saving treatments, and even guide safer public spaces.
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This kind of pioneering work is possible thanks to the generosity of supporters who leave Gifts in Wills. An incredible £237,000 has been left to Meningitis Now so far this financial year.
Every single gift, whether large or small, can help fund breakthroughs, give talented scientists the chance to push boundaries, uncover answers, and bring us closer to a world where no one loses their life or their loved one to meningitis. When you choose to leave a Gift in your Will, you’re leaving something truly extraordinary – hope for the future. To find out more about leaving a gift in your will to Meningitis Now, please visit the Leave a Gift in your in Your Will page of our website. Check out our website for more details www.MeningitisNow.org/gifts-in-wills
Thank you to our wonderful fundraisers: Toby Underwood and Liam Thames Path Ultra Challenge £2,040 Toby’s daughter Ruby contracted bacterial meningitis at 10 months old and thankfully survived. Michael Gumbley Halloween and Christmas displays £217 Michael fundraised through Halloween and Christmas displays to celebrate his son recovering from bacterial meningitis when he was six months old. Beds & Bars ‘Live Your Life Week’ £18,000 Beds & Bars fundraised during their annual charity week, in memory of the founder’s late wife, Franca Knowles. Kaiden Climbing Ben Nevis £1,635 Eight-year-old Kaiden climbed Ben Nevis. He trained for months with the support of Hiking Kids UK and all his family. Go Kaiden! Renishaw for sponsoring both Five Valleys Walk and the Gloucester Christmas Concert. Jack Vernon Paris Marathon, a 100-mile cycle and a swim in the Serpentine! £2,950 Jack is taking on a sporting tribute to his father, Richard, who died after contracting meningitis three years ago. Jack will take on the Paris Marathon, a 100-mile cycle and a swim in the Serpentine!
Grace and Chris Hull Royal Parks Half Marathon 2025 £1,385 Grace and Chris ran the Royal Parks Half Marathon. They beat their fundraising target, to help other families like theirs whose children contract meningitis. Fays Flowers who provided gift-in-kind flower arrangements for our Forever Weekend and sponsored our Tree of Remembrance at our Gloucester Christmas Concert. Louise Done Bury 10k and Yorkshire Tough Mudder £6,000 Louise Done gathered friends and family together in a series of events, such as the Bury 10k and Yorkshire Tough Mudder, to mark 10 years since her son Harry’s death from meningitis. Deborah Azzopardi who spoke so passionately and engaged our guests at the Midsummer Party ’25. The Adjei family who have hosted various events, including a poetry evening and danceathon. The family are marking 25 years since son Ato contracted pneumococcal meningitis and was left with severe aftereffects.
And all our volunteers and supporters!
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Lantern Memory Walk On Sunday 4 October 2026, join us at Wythenshawe Park, South Manchester, for a deeply moving evening of remembrance — our Lantern Memory Walk. This special 5k walk is open to all ages and created for everyone who has lost someone to meningitis or whose life has been forever touched by the disease. As dusk falls, we will walk together, each carrying a lit lantern — a symbol of love, reflection and unity. Side by side, we’ll honour the lives taken too soon, cherish the memories we hold dear, and stand together in hope for a future free from meningitis. Every step you take and every pound you raise will help us continue supporting families devastated by this disease. Register your interest via the Lantern Memory Walk 2026 page on our website.
Sign up to our Meningitis Matters emails to keep up-to-date with everything that is happening at Meningitis Now. www.MeningitisNow.org/signup Fern House, Bath Road, Stroud, Gloucestershire, GL5 3TJ Tel: 01453 768000 Email: info@meningitisnow.org Web: www.MeningitisNow.org fb.com/meningitisnow @meningitis_now
@meningitisnow @meningitisnow
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Need to replenish your Christmas card stash for 2026? Grab a bargain in our Christmas card sale! Navigate to the Christmas card webpage on our website to see the bargain prices on our favourite Christmas cards. www.meningitisnow.org/supportus/donate/christmas-cards-andecards/