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Matters

Welcome to Meningitis Matters

A very warm welcome to Meningitis Matters, our regular newsletter to help you stay in touch with everything that’s been happening at Meningitis Now over recent months and what’s coming up.

Of course, we couldn’t deliver any of this vital work without your ongoing commitment, dedication and energy. As more and more people come to rely on our support, it’s your contribution that makes the real difference.

You help us in so many ways – joining our campaigns (like our latest No Plan B for MenB, and our student campaign), donating to our appeals, playing our weekly lottery, sharing your meningitis story, taking part in a challenge event (Sahara Trek, anyone?) to organising your own fundraising activity.

Indeed, the last few months have provided the perfect snapshot of the kinds of activities that characterise the work of our charity.

We’ve had the London Marathon – always an incredible, high-energy day. Our mile 23 cheer point was as raucous as ever and well supported by volunteers and families.

Then – in the build-up to the annual national celebration of volunteers that is Volunteers’ Week – we’ve had our annual Ambassador Day. Our Ambassadors are great and energetic advocates of our charity. They are more diverse than ever, with people of all ages, backgrounds and experiences coming from across the UK. I always say that a charity is nothing if not its people – and our Ambassadors illustrate this perfectly.

Supporters also joined me at University College London to meet the team behind one of the research projects we fund, looking at a new vaccine for pneumococcal meningitis. We all left feeling optimistic about the potential of this research and look forward to hearing what happens next.

And, as Meningitis Matters prepares for press, we’re busy putting the finishing touches to our Midsummer Party, once again kindly hosted by the Mall Galleries and featuring the inspiring work of members of the Society of Women Artists.

All of this is further detailed 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 again for everything you’re doing to help us move ever closer to our ambitious vision.

No Plan B for MenB campaign

Our important campaign, ‘No Plan B for MenB ’, calls for improved access to the MenB vaccine for those most at risk.

MenB is one of the most common causes of meningitis in the UK, especially amongst under-fives and young people aged 15-24. During the COVID-19 pandemic, cases of meningitis fell to an all-time low in the UK. Since then, cases of MenB disease have been increasing amongst teenagers and young people.

Dr Tom Nutt, Chief Executive, Meningitis Now

We have effective, life-saving vaccines against MenB, which have been offered to babies on the NHS vaccination programme since 2015. However, those born before 2015 are mostly unvaccinated against MenB.

We believe the vaccine should be offered to teenagers and young people. It is vital that we protect this at-risk age group. There is no plan b when it comes to preventing MenB –we must vaccinate young people to protect them.

We hear the stories of families affected by MenB every week. We know the devastating toll the loss of a young person to MenB has on families. That is why we have launched our ‘No Plan B for MenB’ campaign, and calling for the following three things:

• The MenB vaccination to be given to all those at most risk of disease.

• A MenB booster programme to protect adolescents from 2030.

We have launched a petition - sign it now to pledge your support for these important aims. By signing our petition, you can help bring us one step closer to protecting more people against MenB.

Please go to www.MeningitisNow.org/ noplanb to sign the petition.

Spread the word and keep up to date with our campaign by following us on Instagram or Facebook.

Share your MenB story

If you or a loved one have been affected by MenB, your story can help us show the true impact of this devastating disease. Please head to the ‘No Plan B for MenB’ section of our website to share your story. For more stories, you can also visit our website at www.MeningitisNow.org

• MenB vaccination on the high street at a fair price.

A big thank you to our volunteers

Volunteers’ Week takes place during June each year. It is an annual celebration of volunteers across the UK and the perfect time to say thank you.

According to the UK Volunteering Forum (the partnership that leads on Volunteers’ Week), 14.2 million of us formally volunteer at least once a month, and volunteering added £4.6 billion in productivity gains to the UK economy in 2024. Some 25 million people in the UK volunteer informally at least once in the year.

Behind these numbers is a huge contribution worthy of a big celebration and a big thank you.

Tom Nutt, our CEO, said: “Our volunteers work as part of a fantastic team across the UK and bring a richness and diversity to our work. We simply couldn’t do what we do without their ongoing support, generosity and inspiration – we’re so grateful to you all, thank you.”

Our Volunteer Manager, Isobel Black, added: “With the continued support, enthusiasm and hard work of our wonderful volunteers, we’re able to achieve so much more in our fight against meningitis.”

Student awareness

As students begin making plans to go to college and university, we want to ensure they know the signs and symptoms of meningitis and to ‘sound the alarm’ if someone is ill and getting worse.

This is what our volunteers tell us …

Meningitis Now has helped to transform a dark, frightening period of my life into an opportunity to make a difference and connect with incredible people.

I always enjoy volunteering and always come home feeling I’ve made a difference!

It’s helped me to understand myself and what I’m going through and overall has proved hugely beneficial to my recovery and also towards raising awareness.

I personally get so much out of volunteering, from opportunities to learn new skills to making so many new connections both in the charity and in my community, to getting to attend fun events.

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

The aim this year is to get our awareness stickers into every UK university. If you can help us with this goal, please do get in touch or order our awareness materials via www.MeningitisNow.org/students

Twenty-five-year-old Alex tragically died in 2020. When Alex became unwell, he struggled to gain access to healthcare services quickly – it took five days to be diagnosed and treated for meningitis, by which time it was too late to save his life.

In January, along with the PSHE (personal, social, health and economic) Association and Alex’s mum Sue Astley Theodossiadis, we helped produce two PSHE lessons which teach 16–18-year-olds how to recognise serious illness in themselves and others, and to have the confidence and knowledge to navigate the healthcare system.

Impactful new student film

Our CEO, Dr Tom Nutt, said; “It’s so important that young people have the confidence and knowledge to understand what may be happening to them when they are unwell and to know when to seek medical help or the help of others. ”

With thanks to some generous funding from GSK, we have created an impactful new meningitis awareness film aimed at 16-18-year-olds. The film will be shown to sixth form students preparing to go off to university, where their risk of contracting meningitis increases.

The film features Eliana, who had meningitis during her first year of university. Alongside the launch of the video, we have created new student awareness materials, which will be distributed to students via our amazing volunteer network. We have more videos in production which feature three young people - Ben, Becca and Leo - who also all had meningitis at university, which will be coming out in the upcoming months.

Making our support work possible

Our support is a lifeline for people how have experienced meningitis. We are extremely proud to provide opportunities for families with similar experiences to meet and share their stories, offer exciting new experiences to young people to help them gain confidence and develop skills, and to offer one-to-one support via our Community Support Officers. We can provide such life-changing support because of key funders like the National Lottery Community Fund.

We have received more than £1.77 million from the National Lottery Community Fund over many years of support, making them one of our most significant funders.

Center Parcs success!

Young people met and shared experiences at a packed weekend of fun and personal growth, as part of our Believe & Achieve programme. The agenda included a climbing wall adventure and a thrilling escape room challenge – both designed to stretch comfort zones and build trust. A sociable shared meal and group life coaching session created space to reflect, make connections and think about personal and professional aspirations for the future.

Following the success of our Center Parcs trip, we are currently organising our next residential for young people, which takes place in early September. If a young person you know would like to get involved, please check the website for details.

The Fund have recently awarded us £17,800 for our next Forever Weekend and Family Day, and £10,000 for our support services in Wales. We also have a five-year grant to help fund our Believe & Achieve programme. Thank you!

This funding enables us to continue to deliver our support.

Our support events

Our Family Days, for those with children under 16, are just one of the ways we provide support to those affected by meningitis. We also run action-packed Believe & Achieve weekends for young people and Forever Days, which bring bereaved families together to remember and celebrate the lives of loved ones. Throughout the year we also run online events, such as the incredibly impactful anxiety management course. To find out more about our upcoming support events, visit www.MeningitisNow.org/support-events

The biggest marathon on the planet

This year’s London Marathon broke records for being the biggest marathon of all time. It is always an exciting opportunity to see our incredible supporters in action.

It was such a good experience and nice to have a break where you’re understood without explanation. I am proud of, and will remember, the open conversations and people being comfortable to share.

www.MeningitisNow.org/believe-achieve-18-25-weekend

Libby’s amazing marathon

Libby, from Torquay in Devon, was 11-months-old when she became ill with pneumococcal meningitis in October 1999. It left her profoundly deaf and with epilepsy, but that didn’t stop her signing up to run this year’s London Marathon. Libby was also running in memory of her cousin Nicholas, who sadly died from meningitis shortly before she became ill.

So how did it go?

“I had the most amazing time!” Libby told us, “I finished in 5 hours 15 – I’m super proud of how much I pushed through the aching, pain and exhaustion. Nothing could have prepared me for the last six miles – I just had to remember why I was doing it. All my training paid off – all the wet, miserable days after work were worth it!

“The atmosphere, people cheering you on, my family and friends coming to support me meant so much. When I crossed that finish line, I didn’t expect to cry. What pushed me through most was thinking about all the people who had confidence in me, donated so generously and their thoughtful messages.”

Read more on Libby’s story on our website.

Keep up to date with all our news on our website at www.MeningitisNow.org/news

Here’s what some of you have been up to…

Paralympian Lyndon Longhorne, from Newcastle, is taking on his biggest challenge yet – to be the first quadruple amputee to complete an Ironman Challenge in under 24 hours.

Lyndon was eight-months-old when he contracted meningitis, which led to the amputation of both legs, his right arm, and the fingertips on his left hand.

Despite these challenges, he has dedicated the last 12 years to competitive swimming, achieving many milestones, including representing Great Britain in the Tokyo 2020 Paralympics. He is determined to become an Ironman, taking on the challenge of a 2.4-mile swim, a 112-mile bike ride, and a 26.2-mile marathon in and around the Liverpool Docks.

The challenge will push Lyndon to his limits. Lyndon says: “Throughout my life, I have faced not only physical challenges but also significant mental health struggles. These dark moments were some of the toughest battles I’ve ever fought. My experience in competitive swimming has given me the resilience and determination needed to face my new challenge head-on.”

As part of our Rebuilding Futures Fund, Meningitis Now has provided a grant towards a specially adapted chair, which Lyndon will use for the run part of the challenge.

Laura Barley took on our Squats Save Lives challenge in memory of husband, Euan, and to raise awareness of meningitis in adults.

They were doing regular tests to ascertain if there was brain activity, but sadly they were all negative.

Inspired by these stories? Check out our website for more about ways you can fundraise for us – www.MeningitisNow.org

“Euan contracted meningitis in May 2016. We initially thought it was a cold. The following day, Euan also had an earache. He went to bed early so, in the morning, I went to see how he was feeling. He was on the floor having a seizure. He couldn’t communicate with me and was obviously in pain.

“I immediately called an ambulance. When the paramedics arrived, they took Euan out of the house and I remember taking my son into our bedroom – I didn’t want him to see his dad being taken out of the house for the last time like that – I just knew it was bad.

“Various tests were conducted but nothing was found. They were giving Euan lots of antibiotics because they knew there was an infection, but they couldn’t initially tell where it was. He was transferred to ICU and put on a ventilator.

Olivia’s fundraising walk to the hospital that saved her life.

At eight-months-old, Olivia became seriously unwell and was rushed to hospital where she was treated for bacterial meningitis.

To mark the 25th anniversary of the Portland Hospital saving Olivia’s life, Olivia took on a very special fundraising challenge, to raise money for Meningitis Now. She walked several miles from her home to The Portland Hospital surrounded by family and friends, honouring the journey she made 25 years ago.

“Taking on the walk from my home to The Portland Hospital was such a proud moment for me. I’d barely done any training – I don’t exercise or go to the gym – but I was

“Euan’s parents arrived on the Saturday. It was the day of his surprise 40th birthday party. He was taken off the ventilator and passed away a short time later.

“I’ve done a number of fundraising events on behalf of Meningitis Now since then, including a tea party, casino night, and trekking the Great Wall of China with amazing family and friends. I have raised over £25,000, but it’s the awareness that really matters to me.”

Thank you, Laura, for sharing your story, and to everyone who took part in the Squats Save Lives challenge. 131 people raised £17,800!

determined to push myself for this cause.

“I knew it wasn’t supposed to be easy.It was meant to be a challenge to honour those who have lost their lives to meningitis, the families who have suffered and people who have lost limbs. I am still here with all functioning limbs and I’m extremely grateful.”

Olivia and all of her amazing friends and family raised an awesome £4,000. Thank you to the whole team!

Weekly Lottery

Play our Weekly Lottery from just £1 per week for your chance to win a top prize of £25,000 or one of 36 other exciting cash prizes!

a week to play 5 6 2

To take part, all you have to do is choose your favourite six numbers and wait until the big announcement each Friday to see if you’ve hit the jackpot. As well as the £25,000 grand prize per week, there’s a 2nd prize of £1,000, and 35 other guaranteed runner-up prizes ranging from £5 to £20.

By joining in the fun every week, you will also be doing something incredible – you will be helping us move closer to our vision of a future where no-one in the UK loses their life to meningitis and everyone affected gets the support they need to help re-build their lives.

https://MeningitisNow.affinitylottery.org.uk/

Anything we can give to Meningitis Now is worth it, and it was a lovely surprise to find out we’d won something too. Tom, South East

Gifts in Wills

Gifts in Wills from our supporters are an incredible way to help us save lives and rebuild futures.

All gifts, no matter what their size, are welcome and will help to make a huge difference to people and families facing meningitis.

The kind of gift you would like to include is entirely up to you. You can leave a cash gift for the sum of your choice. Or you can decide to leave a share of what is left after you have provided for your loved ones.

See our website for more details and support with leaving a gift in your will to Meningitis Now. Thank you so much.

Thank you to our wonderful fundraisers:

Emily Gott Skydive

£630

We are so grateful for Emily’s amazing efforts! What a superstar!

ALB Swimming

Swim around the world in seven days

£13,800

ALB Swimming are incredible! What an amazing amount to have raised in memory of their dear friend Jaxon.

The team at Kent Frozen Foods

The South Downs Way – 100 mile relay

£2,325

We would like to thank all of Mia B’s family and friends for their continued support, and a special thank you to the team at Kent Frozen Foods..

Justin, Andy and Josh 24 hour march for Marlee

£8,944

Thank you to Justin, Andy and Josh who walked 100km in 24 hours raising an incredible £8,944.

Luke Denver

Great Manchester Run Half Marathon 2025

£1,040 (so far)

We are so grateful for Luke’s hard work fundraising and spreading awareness! What an incredible challenge to take on after his own experience with meningitis late last year.

Acacium Group

London Landmarks Half Marathon 2025

£9,435

We would like the thank the team from Acacium Group who took part in LLHM25 to celebrate the memory of their colleague Andy.

Kye Baylis and Team

Great Glen Way in a Day Challenge

£1,621 (so far)

We are so grateful to Kye and the rest of the team for taking on the Great Glen Way in A Day challenge in support of Meningitis Now.

Laura Cashin

Paris Marathon 2025

£1,257

Thank you to Laura for her incredible fundraising efforts!

Glee Bah Gum Choir

Charity of the Year

£828

Thank you to the Glee Bah Gum who selected Meningitis Now as their Charity of the Year.

And all our volunteers and supporters!

Join us for our Five Valleys Walk this September

Our flagship event through the beautiful Cotswold countryside takes place on Sunday 28 September.

Early Bird tickets are already available on our website and open until the evening before the walk.

Early bird tickets

Adult: £12.50

Child: £6.50

Family ticket (two adults and two children): £35

Group ticket: £40

On the day tickets

Adult: £15

Child: £8

You can find out more and sign up on the Five Valleys Walk page of 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

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