Matters
Making a difference, every day
Welcome to Meningitis Matters
I’m delighted to welcome you all to our summer issue of Meningitis Matters, bringing you up to date with all the news from Meningitis Now.
As ever, we’ve had a busy and varied few months. The meningitis outbreak in Kent was a worrying and distressing time for students, families and the wider community, and our thoughts remain with everyone affected by this.
The charity and our supporters pulled together to deal with the unprecedented media interest, but also to support anyone affected. The Kent outbreak was followed by three cases in Weymouth, and further cases of MenB in the Reading area – a reminder for everyone, wherever you are, to remain vigilant to the signs and symptoms.
In response to these tragic outbreaks, we urged the Health Secretary to address the MenB protection gap affecting teenagers and young adults. After a few weeks of anxious anticipation, we welcomed the announcement by the UK Health Security Agency (UKHSA) of a new standalone vaccination programme for 18-year-olds and young adults – a major step forward in the fight to help protect young people from the disease. There is still more work to do to ensure everyone at risk is protected, including those already at university and younger teenagers.
As part of our 40th anniversary, we launched our ‘Stories of hope: Meningitis Now at 40’ touring exhibition – do try and get along to see this if you can. The exhibition features 40 carefully selected stories from the many thousands
we’ve been part of over the years – stories of grief, sadness, determination, resilience, kindness and compassion.
We marked our 40th with a garden party in our Remembrance Garden at our Head Office in Stroud.
I can’t pass up the opportunity to reflect on March’s Sahara Trek – our first overseas challenge in 10 years. This was not only a fundraising success but a life-changing experience for the 28 participants and me. It was moving, awe-inspiring and fun. We laughed, we cried, and we supported one another. You couldn’t ask for a better expression of ‘the Meningitis Now family’ or why the work of the charity makes such a difference.
There’s more on these stories on the following pages, alongside equally moving and uplifting stories, 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
Stories of hope exhibition
In April, we launched our new photography exhibition to mark our 40th anniversary.
‘Stories of hope: Meningitis Now at 40’ tells the stories of 40 people from the charity’s history who have experienced meningitis either personally or in their families. The stories show the resilience of those touched and changed by meningitis.
Working with supporters in environments that help to tell their unique stories, photographer Carmel King captured the strength and hope that unifies the 40 stories.
The exhibition launched in Nailsworth, Gloucestershire, where we welcomed more than 300 visitors and had the opportunity to hear directly from several participants about what the representation of their story meant to them.
Jonathan Brough, who was paralysed from the neck down after contracting meningitis when he was 18, said: “I feel really happy to see myself at the exhibition. I feel a bit emotional as well; I feel really good about myself for pushing through.”
Visitors were encouraged to leave messages in the visitors’ book. One message, from Alex Hathway, from our E-learning partner, Nimble, said: “A picture does indeed paint a thousand words. These photographs are so striking, so emotional, so defiant, and so hopeful. I am taken aback by how much positivity has come from so much adversity. A poignant collection of incredible individuals that support, or benefit from, the wonderful work of Meningitis Now.”
The exhibition then went on to London and Manchester and is due to visit Cardiff, Edinburgh and Gloucester Cathedral.
For more information about where you can see the exhibition, please visit
www.MeningitisNow.org
us celebrate our 40th year by
The Kent outbreak –our reflections
The recent outbreak in Kent has been one of the most intense and challenging periods in Meningitis Now’s recent history.
From the moment news of the outbreak emerged, we moved quickly to react to the public response by providing trusted information, emotional support, expert comment and by campaigning loudly for change.
At the heart of the Kent outbreak – and the subsequent smaller outbreaks in Weymouth and Reading – there has been sadness and loss. We made sure to keep those affected at the heart of our response throughout.
Our teams responded to an unprecedented surge in demand for support and information. Hundreds of calls and emails came into our Helpline from worried parents, students, schools and universities seeking guidance and reassurance. Our Helpline team worked tirelessly to provide calm, compassionate support during an incredibly anxious time.
Our communications team worked around the clock to ensure accurate and timely information was reaching the public. Through our social media channels, website updates, interviews and media statements, we reached millions of people with vital information. In a normal month, we usually feature in around 50 news articles on radio, TV, online and print. During the Kent outbreak that rose to over 2,500 in just a fortnight.
Many of you shared your own experiences of meningitis with the media, bravely highlighting the real impact of this devastating disease.
We worked directly with universities, schools and community organisations, distributing tens of thousands of information leaflets and awareness materials to help young people stay informed and vigilant.
The outbreak once again highlighted the urgent need for change to the UK’s vaccination programme, and we were pleased to see that the media listened to us and helped highlight our ‘No Plan B for MenB’ campaign.
In June, we welcomed an announcement from the UK Health Security Agency (UKHSA) of a new one-off MenB vaccination programme for 18-year-olds and young adults this summer. It is our priority to ensure that as many young people as possible take up the offering and get two doses of the MenB vaccination before they start university.
This programme is a positive step forward in the fight to protect young people against MenB, and one that will save lives. However, we will continue to call for the MenB vaccine to be available for teenagers and young adults as part of the NHS vaccination programme, so that more young people are protected – not just this year but indefinitely.
This is a good first step, but our ‘No Plan B for MenB’ campaign remains vital and a key focus for Meningitis Now – and your support is more important than ever. If you feel able to give, there’s a donation form enclosed to help us continue this vital work. Thank you.
Supporting students at a critical time
This year has been a worrying time for students, parents and education professionals. The outbreak in Kent served as an important reminder of how quickly this disease can affect student communities.
Periods of return, where students are re-mixing socially and living in close contact, can increase the risk of transmission. While the overall risk remains low, raising awareness of the signs and symptoms of meningitis – along with the importance of vaccinations – is vital to ensure early treatment and prevent further cases.
We are committed to supporting students and young people to feel confident to act quickly and get help if someone becomes ill.
We offer a range of free digital resources for universities and sixth forms:
• Materials to promote the free MenB vaccine for eligible first year students
• Awareness videos featuring Eliana, who experienced meningitis as a first-year university student
• S ocial media graphics and reels
• Student stories from Ben, Becca, and Leo
• D ownloadable posters for halls and campus spaces
• Two PSHE lessons aimed at Key Stage 5 students on how to recognise serious illness in themselves and others, and to have the confidence and knowledge to navigate the healthcare system.
In addition, we can provide printed posters, leaflets, stickers, magnets and materials, which can be displayed across campus – such as in halls of residence, student unions, health centres, libraries and other shared spaces.
New online course
We have developed a new learning module with our E-Learning partners Nimble, as part of our response to the outbreak.
The 20-minute module was developed to provide a learning opportunity for students, professionals and parents about MenB.
Nimble approached us during the outbreak, asking how they could support us to raise awareness. The module was then written, designed, checked for disease accuracy and launched within a week to schools and universities impacted.
This module is now available to a wider audience as part of student resources, and to volunteers and families we support to increase awareness and save lives.
Thank you to Nimble for this valuable piece of learning that we can offer.
Let it blossom, let it grow
Our Remembrance Garden at Head Office in Stroud is open to anyone who needs a space to reflect and remember a loved one lost to meningitis.
Established in 2009, the garden was designed by award-winning landscape designer Sue Jollans to offer a tranquil space for contemplation and comfort.
In 2016 ‘The Meningitis Now’s Futures Garden’ was exhibited at the Chelsea Flower Show and won the People’s Choice Award. Sculptures from the garden are still a key feature in the garden today.
The design was inspired by the spirit and energy of families whose lives have been changed by the disease. This garden included five dramatic life-size cedar-wood sculptures of some of the charity’s youngest supporters impacted by meningitis or who sadly lost their lives.
As part of our Forever Fund initiative, families who have lost a loved one to meningitis can have a memorial wooden peg engraved with their loved one’s name. One peg is given to the family while a second peg lines the garden path, forming a lasting tribute within the garden.
For our 40th anniversary celebrations, the garden underwent essential maintenance with remembrance pegs and wooden structures being restored, and planting being rejuvenated to reflect the meaning of the garden.
We wanted the garden party to be an event that gave an opportunity to celebrate, not just the garden refresh but who we are and what this amazing charity has achieved over 40 years.
Tom Nutt, Chief Executive Meningitis Now
40th anniversary garden party
We hosted a garden party in June to celebrate our 40th anniversary and the newly refurbished Remembrance Garden.
Volunteers and staff worked hard to make sure the garden looked its best for the big day. It’s not a complete makeover – we have kept the existing design of natural, wildlife-friendly planting and ensured it remains an accessible, calm and reflective space for families to visit and remember their loved ones.
We replaced the box balls that had succumbed to blight, filled some gaps and added richness to the existing planting scheme, as well as essential maintenance work on the path. We now have a seated arbour, and all of the remembrance pegs have undergone maintenance or replacement work.
The garden party was a wonderful occasion to mark our 40th year, a moment to remember loved ones and a chance to reflect on what’s been a busy and worrying start to the year.
We had gazebos with homemade treats, and a young pianist provided lovely background music. Supporters and their families got the opportunity to see the newly refurbished pegs, and were joined by Community Ambassadors, Business Ambassadors, corporate supporters and charity Trustees to enjoy the day.
A big thank you to RedKite Solicitors, who kindly sponsored the renewal of our Remembrance Garden and the party with a donation of £2,000. This was given in memory of their colleague Jayne’s son, Ben, who tragically lost his life to meningitis whilst on his honeymoon. Thanks also to The Jack Lane Trust and Stroud District Council for their invaluable contributions and to key volunteers who donated three bird boxes for the garden. Thanks also to Highfields Garden Centre for their kind donations of plants.
Men’s support group
A new group offering practical and emotional support for men affected by meningitis has been set up by supporters Augustine Joseph and Ash Parry, who have experience of the disease.
Having spoken together about their debilitating after-effects following meningitis, Ash and Augustine realised how powerful such a group could be in supporting other men who have been affected and driving mutual understanding.
Augustine and Ash have been joined by our Community Ambassador, Graeme Burridge, who lost his daughter, Katherine, to the disease – bringing a different perspective to the group.
Also joining the group is Alex Basford, whose eldest daughter, Mia, died of bacterial meningitis on her 20th birthday in 2023.
The group will offer a range of support, including a WhatsApp group, one-to-one and group meetings, get-togethers, walk and talks and telephone support, with a focus on mental health.
We will apply for grants for a male worker to support the group and funding for a Men’s Weekend, similar to our Forever Weekends.
Our Community Support Officer, Paul Blackburn, will provide initial support for the group.
The group will bring men together to talk through their experiences, support each other and offer a space to connect, talk and share stories.
It will be open to all men aged 18 and over, whatever their experience, including:
• Men who have had meningitis and are dealing with after-effects
• B ereaved fathers or other family members
• Men left as carers for partners or children
• Young men who had meningitis at school or university.
If you are interested in finding out more, please contact our Volunteering Team on volunteering@meningitisnow.org or 01453 768000
Research visit boosts optimism
Professor Darryl Hill and PhD student, Mia Dierks-Treece, from the University of Bristol, gave a team from Meningitis Now an update on their research into meningococcal meningitis.
Three of our Community Ambassadors –Lana Quinlan, Holly McNaughton and Val Stephenson – were joined by our Chief Executive, Tom, Support, Information and Research Director, Sue, and Helpline and Information Nurse, Vicky, to hear more about Mia’s ongoing research project, ‘Survival and Adaptation of the Meningococcus in Aerosol Droplets’, which is funded by Meningitis Now.
This important research demonstrates that the meningococcal bacteria’s survival and transmission rate depends on the bacterial characteristics, together with environmental
factors such as temperature, humidity and droplet size.
The team also had the opportunity to see two research laboratories and were shown specialist equipment Mia uses to collect and analyse data from the experiments she performs, looking at meningococcal bacteria survival in artificial and real saliva.
Vicky said: “We all left the university feeling optimistic about how the research findings could influence potential changes in vaccine and drug therapies, influence changes to infection control procedures and changes to heating or air conditioning in public spaces, which could reduce the survival and transmission rates of airborne bacteria.”
Carry a card, you could save a life
We have refreshed our signs and symptoms cards, so that they continue to deliver life-saving information.
The meningitis outbreak in Kent has been a stark reminder of the need for everyone to understand the signs and symptoms of meningitis.
Our cards play an essential part in raising awareness of meningitis, delivering key information about what to look out for if you suspect yourself or someone else has meningitis. We distribute over a million of these per year.
We are invested in ensuring that they, along with all our other materials, include the most up-to-date information. It is essential that the information included is also easy to understand in what could be a high-stress situation.
We are proud to have the Patient Information Forum (PIF) TICK accreditation quality mark for our health information, which ensures that we are delivering accurate and trustworthy health information.
If you or your organisation would like to order our new cards, either in hard copy or for your mobile, please visit www.MeningitisNow.org/signs&symptoms
Thank you to Pfizer Ltd for providing two grants to cover the printing of the cards.
Corporate partnerships update
Investment solutions business, Parmenion, has chosen Meningitis Now as one of three charity partners for 2026. In April, our founder Jane Wells went along to meet the team.
Jane gave a fascinating insight into the beginnings of the charity, sharing how we grew from a small, local group of concerned parents to a national charity.
So far this year, the Parmenion team have hosted a Brew & Bake, sponsored Jane’s story in our Stories of Hope exhibition and raised £1,151. The team also plan to enter this year’s Five Valleys Walk.
We have also been chosen as Charity of the Year by BNI Compass, a chapter of the wider BNI group (Business Networking International).
The team have committed to raising £8,000 for us and will be taking part in a series of events, including Area Director, Chris Kopec, having his hair coloured pink ahead of the BNI UK Leader’s Conference and National Conference.
Another member, Liz Dyer, will be taking on Ben Nevis and hosting a quiz for us. Member Tom Durrant will be hosting a golf day next summer, alongside the team at Gloucester Golf Club. Lee Timmins, from Colour Connection, will also be taking on this year’s Five Valleys Walk.
Thank you to the following companies for choosing us as their Charity of the Year: Quayside Wealth Management, Randall & Payne, Stroud District Council, Clear Future Financial Planners, Naylor Powell Estate Agents, Proclaim Group, Manning Gotlieb, Club Chemistry and GB Pizza.
If you would like to find out more about how you can partner with us in our 40th anniversary year, contact us at: partnerships@meningitisnow.org
Selected for BBC Lifeline, BBC One’s appeal programme.
Airing on BBC One and BBC Two this October, the broadcast will highlight the work we do at Meningitis Now and appeal for donations to support us.
This is a fantastic opportunity for us to reach a national audience, and we’d so appreciate your engagement with the appeal.
Our appeal is due to air in October 2026. We’ll confirm the exact date soon on our website and social media channels.
BNI Compass Area Director, Chris Kopec
Sahara Trek
April’s Sahara Trek was our first overseas challenge in 10 years. This was not only a fundraising success but a life-changing experience for the 28 participants. It was moving, awe-inspiring and fun. You couldn’t ask for a better expression of ‘the Meningitis Now family’ or why the work of the charity makes such a difference. An incredible £87,350 was raised.
Our thanks for their support go to…
The 51 charity place and 7 own place runners who took on the incredible challenge of running the London Marathon for Meningitis Now, raising £188,886 (and counting!). One of the team, Jessie Carter, seized the opportunity and dressed up as Mary Poppins for the event, raising over £11,000. Another was Tom Barton from RBC Brewin Dolphin, who raised an incredible £9,264
Our wonderful event volunteers who attended both the London Landmarks Half Marathon and London Marathon – these events wouldn’t happen without your support on the day!
Matt & Zoë, who raised an amazing £2,153 by asking for donations in lieu of wedding gifts, in memory of their nephew Jamie.
Julie Bradley, who held a 30th birthday party in honour of daughter, Chloe, who died aged three, 27 years ago. Julie, along with family and friends, raised £285 in memory of Chloe.
Martin Gordon, who took on the challenge of walking 100 miles in the month of February. He completed the challenge and raised £400
Charlotte Brown, who ran the Sheffield Half Marathon in memory of cousin, Georgia, who sadly died eight years ago, aged 19, raising £710!
Josh Briggs, who took on the challenge of three events in 3.5 days at the end of June, including a half-marathon, a turf game, and a National Three Peaks Challenge (within 24 hours). So far, Josh has raised £2,215!
Amy Goldman at Stewarts Law, for taking on the London Landmarks Half Marathon and raising a wonderful £1,096, as well as colleague Karen Calverley, who ran the Victoria Park 10k, raising a further £1,011
The team at Acacium Group, who took on the Windsor 25k Ultra Challenge, raising a fantastic £2,425.
Caroline Gardner Publishing for their generous donation of £10,716, raised from the sale of their Christmas cards.
Ben Williams and the team at John F Hunt, who raised an outstanding £25,000 at their golf day event.
And all our volunteers and supporters!
Join our Five Valleys Walk and the Five Valleys 5KSunday 27 September
With routes and activities for all ages and abilities, it really is the perfect family day out for all!
Although the 21-mile route is a real challenge, you can choose your distance and cover anything from 1.5 miles to the full course.
We also have a brand-new addition to the day –the Five Valleys 5K! This is a shorter accessible walk, separate from the main 21-miles, and will take you along the beautiful canal path to Stonehouse, and then back to Stroud Cricket Club.
Christmas card competition
Get creative this Christmas and help us spread some festive cheer by entering our annual Christmas card competition!
Whether you love drawing, painting, colouring or digital design, we’d love to see your artwork inspired by the festive period, hope and togetherness. The competition is open to everyone and is an opportunity to dedicate your design to someone affected by meningitis or simply show your support for the meningitis community.
Thank you to bottlegreen for sponsoring this year’s Five Valleys Walk.
Tickets are on sale now – go to www.FiveValleysWalk.com or call us on 01453 768000 to buy yours.
The winning design will be one of our official Meningitis Now Christmas cards for 2026, so let your imagination shine!
Visit www.MeningitisNow.org to find out more about how to take part.
The closing date for entries is Sunday 23 August, so don’t miss your chance to get involved.
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
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