Meningitis Matters Winter 2025

Winter 2025 issue 3

Meningitis Matters Making a difference, every day

Supporters help us ‘Light the Tracks Ahead’ for World Meningitis Day King Edward VI School’s students smash their fundraising target Climbing Mont Blanc to raise meningitis awareness

Meningitis Matters

Inside this issue 01 Welcome 02 Students smash their fundraising target

03 Supporters help us ‘Light the Tracks Ahead’ for World Meningitis Day

05 Student Campaign - Sophia’s story 06 Concern over sharp rise in meningitis cases

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Amazing support

09 Bringing families together 10 A fantastic Five Valleys Walk 11 Vanessa and Lloyld’s story 11 Our moving Christmas concerts 12 Conquering Mont Blanc to raise meningitis awareness

13 Ways you can support us 14 Thank you to…

Welcome Welcome to the winter issue of Meningitis Matters, helping you stay in touch with all that’s been happening and what’s coming up in 2025 at Meningitis Now. We’ve been continuing to make real progress in our fight against meningitis through our ongoing research, awareness and support activities. Of course, we couldn’t begin to deliver any of this without the ongoing commitment and support of our wonderful supporters. Your contribution helps us make a difference, every day.

Contributions like the £52,000 raised by those who took part in the Five Valleys Walk.

Or the volunteers and supporters who shared their story for World Meningitis Day where we teamed up with GWR to light the tracks ahead to a future where nobody in the UK dies of meningitis. There’s more on these and many equally moving and uplifting stories included in this issue.

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For more stories like these you can also visit our website at www.MeningitisNow.org.

If you received this newsletter in the post, you’ll find a donation form included where you can help support our work.

Thank you again for everything you’re doing to help and we look forward to your wonderful support through 2025 and beyond.

Dr Tom Nutt,

Chief Executive, Meningitis Now

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King Edward VI School’s students smash their fundraising target Students and staff from King Edward VI School (K.E.S) – William Shakespeare’s school in Stratfordupon-Avon – have raised an amazing £26,000 towards our work, after we were selected as their Charity of the Year.

We were nominated by two A-level students, Katherine Muldoon and Job Estill, who have both seen the impact meningitis can have on loved ones.

Katherine said, “Following the death of my grandma due to meningitis, my family received support from Meningitis Now, which helped us a lot. I became an Ambassador for them and through this I have learned more about the disease and what the charity does in terms of raising awareness.

Raised an amazing

£26,000

“Knowing both how vital the charity’s work is in saving lives and how close it was to both of our hearts, we are very grateful to have successfully campaigned for it to be charity of the year at K.E.S.” Job added, “As my dad was hospitalised with the disease when I was four years old, meningitis has been a prominent illness to me. Meningitis Now offered him support to aid his, fortunately, successful recovery.

“However, not only does Meningitis Now work with those affected by meningitis, but the charity’s work in raising awareness about the disease is crucial, considering the symptoms are frequently ignored.”

For the past two academic years, students have held a variety of fundraisers, including 24 in 24, which saw 100 students and staff run 4km every four hours for 24 hours. They also handed out our symptoms cards to spectators along the route of the annual Shakespeare Birthday Parade.

K.E.S headmaster Bennet Carr also did his bit, taking on the London Marathon for us.

Thank you everyone and well done on beating your fundraising target!

Photography by Mark Williamson/Stratford Herald

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Meningitis Matters

Supporters help us ‘Light the Tracks Ahead’ for World Meningitis Day In honour of World Meningitis Day on 5 October, we teamed up with Great Western Railway (GWR) to run a special train service, so that we could ‘light the tracks ahead’ to a future where nobody in the UK dies of meningitis and all those affected get the support they need to rebuild their lives. This was followed by a gathering at London Paddington, attended by Meningitis Now President Lisa Snowdon.

Our supporters joined a dedicated carriage on the 0959 service from Cheltenham Spa to London Paddington, calling at Stroud where our head office is based. On board, they shared their meningitis experiences with other supporters and the news media, highlightingthe importance of World Meningitis Day in fighting back against the deadly disease.

survivors can be left with – especially the hidden disabilities and after-effects that cannot be seen.

Erin, who contracted meningitis when she was eight, was one of our supporters who shared her experience on the journey.

She reflected;

“Working with the press means that the information and stories shared by myself and others will be widely available. Not only will increasing awareness help other survivors to feel less alone in their experiences, but it will also help wider audiences to gain an understanding of some less talked about after-effects of the disease, sparking opportunities for new conversations and understanding of life after meningitis.”

“The day was very important because it provided an opportunity for a variety of individuals to come together and share our experiences of meningitis, to raise awareness of meningitis and the after-effects that

A huge thank you to everyone who was involved during the day and to GWR and Network Rail for their fantastic support.

And to HSBC for lighting up their offices in orange on World Meningitis Day.

Help us to save lives and rebuild futures by donating to Meningitis Now, via our website www.MeningitisNow.org/donate 3

Winter 2025 issue 3

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Meningitis Matters

Student Campaign – Sophia’s story At the start of the academic year, we encouraged students, parents and universities to recognise meningitis as an emergency and ‘sound the alarm’ if they suspect meningitis by seeking urgent medical help.

Early symptoms of meningitis can be mistaken for the flu or even a hangover, so it’s vital for students to know when to seek help.

To support this campaign, 20-year-old University of Manchester student Sophia Speirs shared her story. Sophia nearly died from meningitis in 2023, but says her life was saved thanks to her mum and university flatmates who sounded the alarm by calling emergency services who rushed her to hospital.

Sophia shared, “I had just celebrated my 19th birthday and five days later I was fighting for my life in intensive care.

I woke up feeling incredibly achy, which quickly turned into violent sickness.

“The next morning, I felt even worse. I heard my mum ringing me to check I was ok, but she quickly realised I was unable to speak properly. I was slurring my words. She got me to text my flatmates asking for help.

“Two of my flatmates then came rushing into my room. My parents also called campus security who came straight away.

“I am grateful to be alive and although I feel unlucky, I know that compared to others I got off lightly! I am really keen to spread awareness. It’s so important that university students know what to do in a case of meningitis.”

Thank you to Sophia and all of our supporters who shared their stories to help raise awareness to students and young people.

Our 2024 student campaign was featured on BBC News and various radio stations and local papers.

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Winter 2025 issue 3

Concern over sharp rise in meningitis cases In September, new data from the UK Health Security Agency (UKHSA) showed a significant rise in cases of invasive meningococcal disease (IMD) across England over the past 12 months. Data from the rest of the UK shows similar trends.

In Wales, cases increased from According to the report, in England there were:

205

cases confirmed in 2021/22

396

cases confirmed during 2022/23 (an increase that includes 33 deaths)

17 in 2022

29 in 2023

Cases in Northern Ireland more than doubled from

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in 2021/22

20

in 2022/23

And in Scotland, cases increased from Data from the rest of the UK showed similar trends.

29 in 2022

During the pandemic, cases fell to an all-time low and the near doubling of cases of the disease across the UK in one year has brought the figures close to pre-pandemic levels.

53 in 2023

particularly those in unvaccinated age groups, to familiarise themselves with the symptoms and to act swiftly if they suspect meningitis.”

Dr Tom Nutt, Chief Executive at Meningitis Now, said, “While the decrease in cases during the pandemic provided some respite, this surge is a clear reminder that meningitis remains a critical health threat.

Reports of the rise in meningitis cases led to our appearance on BBC Breakfast and STV News, which gave us a platform in which to raise awareness of the signs and symptoms of the disease and encourage people to act quickly if someone is ill and getting worse.

“We want to stress the importance of vigilance and vaccination. We urge everyone,

Keep up to date with all our news on our website at www.MeningitisNow.org/ 6

Meningitis Matters

Amazing support Our supporters have, as always, been very busy and brave as they come up with a range of amazing challenges and events to support us. Recently the four elements – earth, air, water and fire – have all been represented.

On the ground we’ve had people like Scott who scaled the heights of Mont Blanc, the highest mountain in the Alps (and indeed all of Western Europe); the Cycle for the Vicar group (top right) who cycled all the way from Paris to Somerset in memory of friend Josh Vickery; and other supporters who have found creative new ways to fundraise, such as Ben and Bertie (top left) who unicycled between London and Bristol.

More ground was covered by Walk for Lloyd (middle left), a group of family and friends who climbed all 214 Wainwrights in memory Lloyd Sutton.

Not forgetting the 1,400 of you who took on our Five Valleys Walk this September, helping us fight meningitis every step of the way.

Leaving the land behind, some have taken to the skies, either with a parachute for a daring skydive like Nicola or strapped to a biplane for a spot of equally daring Wing Walking like Josie (bottom right).

On water, earlier this year, another team braved the ocean swell, as Rod Adlington and his team - the Brightsides - rowed 3,200 miles across the Atlantic (bottom left). In calmer waters, we were thrilled to team up again with national swim school Turtle Tots for Splash Now in October.

Completing the round-up of the elements, we have also seen more brave supporters walking across a bed of hot embers as they took part in our firewalk (middle right).

We never fail to be amazed – and hugely grateful – about the lengths you go to to support our work and look forward to hearing from you about what you have planned next.

Whatever it is you do, thank you for your support – it means the world to us and those we support. Thank you all.

Inspired by these stories? Check out our website for more about ways you can fundraise for us – www.MeningitisNow.org 7

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Meningitis Matters

Bringing families together We recently invited families with a meningitis experience to enjoy the fun at our free Family Day at Winchester Science Centre and Planetarium.

Meningitis changes lives and futures, which is why bringing families together is so important.

The planetarium was a feast for the eyes, as we flew through our solar system whilst learning a little more about our galaxy…who knew that Uranus used to be called George?

Families who attended the support day shared;

It was a fantastic day, well organised and enjoyable for all.

Then we were treated to magic potions at the Science Show, seeing the invisibility potion appearing and disappearing in front of our eyes, and elephant toothpaste expanding out of the beaker.

As well as experiencing the wonders of science, Family Days are an opportunity for families to meet others with similar experiences. A fun day with your family may seem like a small thing, but when your family has lived through the trauma of meningitis, it means so much.

We really loved the Planetarium and meeting the team.

We felt very welcome.

Our support events Our Family Days 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, as well as Forever Days, which bring bereaved families together to remember and celebrate the lives of loved ones. In addition to these, throughout the year we also run online events that are tailored to specific topics.

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If you’ve been affected by meningitis and want to find out more about how we can support you and your family, contact our nurse-led Helpline on 0808 80 10 388 or email helpline@meningitisnow.org We also share information about our support events on our website.

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A fantastic Five Valleys Walk Our flagship sponsored walk took place in September and saw over 1,400 walkers walk through the stunning Cotswold countryside, helping us in the fight against meningitis every step of the way.

We estimate across the UK, 22 people a day get meningitis, so every walker was encouraged to raise a minimum of £22 in sponsorship or to donate £22. The walkers certainly achieved this - and more. Together they raised an incredible £52,000!

Our volunteers helped ensure the day was a great one, providing encouragement at every stop along the way so those taking part were able to enjoy a great day of walking, entertainment and local food.

I’ve done the Five Valleys Walk around eight times, starting at least ten years ago. It’s on our calendar every year, it’s one of my favourite things and every year I bring a different group of people and it’s just a wonderful, wonderful charity. It’s a beautiful day and the countryside is always stunning.

One of the walkers, Sal.

Together they raised an incredible

£52,000

Walkers chose how far they wanted to walk, covering anything from 1.5 miles to the full 21-mile route, and took a free bus back to their starting point when they’d had enough. Local businesses joined along the route, providing snacks and drinks, and the Meningitis Now team were ready to welcome back walkers at Stroud Cricket Club with hot food and drink.

Many thanks to our walkers and of course our volunteers who helped create an encouraging atmosphere and made the day run as smoothly as possible.

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Meningitis Matters

Vanessa and Lloyld’s story Vanessa’s son Lloyld had meningitis as a baby, which resulted in aftereffects including an acquired brain injury. Through some funding from the Rebuilding Futures Fund and our Community Support team, Vanessa and Lloyld were able to access much-needed support. Vanessa shares her story; “We had support from a Meningitis Now Community Support Officer who was so helpful. She was so supportive and always told me to go at Lloyld’s pace. It was really nice because no one else seemed to understand to the level she did. Every time I spoke to her, it reaffirmed to me that I was doing the right things to help him.

“Meningitis Now also provided us with some financial support through the Rebuilding Futures Fund, which provided us with funding towards 12 sessions of play therapy.

The play therapist really brought him out of his shell and gave me lots of advice on how I can continue to help Lloyld.

“Meningitis Now has literally changed our lives. The support has been absolutely phenomenal. And it’s not just what they’ve provided initially. It’s the knock-on effect from that, as well - it’s created connections for us to find other support too.”

If you’d like to share your meningitis story with us, you can find the form on our website. www.MeningitisNow.org

Our moving Christmas concerts A huge thank you to everyone who supported and attended our Christmas concerts in Gloucester and London.

Every year, we remember those who have lost their lives to meningitis by adorning our Tree of Remembrance in Gloucester Cathedral with ribbon decorations as part of our Ribbon Appeal.

A special thank you to Sue Theodossiadis and Dr Alexander, who kindly shared Alex’s story as part of our Ribbon 11

Appeal last year.

This annual appeal helps to raise vital funds to ensure Meningitis Now can continue to be there for everyone facing life after meningitis.

We never forget the lifelong impact on families who’ve lost loved ones.

Remembering the people lost to this terrible disease continues to be a very important aspect of our work.

Winter 2025 issue 3

Conquering Mont Blanc to raise meningitis awareness Scott from Wales climbed Mont Blanc, Western Europe’s highest mountain, to raise funds for us in honour of his daughter, Noa-Rose, who had meningitis.

Scott’s wife Emma shared Noa-Rose’s story with us; “My little girl, Noa-Rose, became unwell in December 2022 and was diagnosed with meningococcal group B meningitis. Watching her fight for her life was one of the hardest things any parent would have to watch.

“Thankfully she survived, but she has now been diagnosed with epilepsy as a result of meningitis. She is still young, so we are unsure what other impacts meningitis will have on her.

“We were struggling to come to terms with her illness, life after meningitis and the disability she has been left with until a friend suggested we reach out to Meningitis Now.

We want to turn our story into a positive one, raising awareness to save lives.

Scott and his team’s fundraising efforts raised over

£2,000 “Meningitis Now has been a lifeline to our family and stand 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.

“They have helped turn a difficult time into a bearable time. From listening to our concerns and offering reassurance, to just being there when we’ve needed a friendly chat.”

Scott added, “I wanted to give something back to Meningitis Now to help support their research and enable them to continue the amazing work they do in supporting those affected by meningitis.”

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Meningitis Matters

Gifts in Wills Gifts in Wills from our supporters are an incredible way to help us fulfil our vision of a future where no-one in the UK loses their life to meningitis and everyone affected gets the support they need.

The kind of gift you would like to include in your Will 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.

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

Check out our website for more details www.MeningitisNow.org/support-us/ donate/leave-a-gift-in-your-will/

6 Weekly Lottery

You can make extraordinary things happen when you make a regular donation; and all for the cost of a coffee and a cake.

Play the Meningitis Now 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!

Regular gifts make an extraordinary difference to our work. Your committed support helps us to save lives and rebuild the futures of those affected by meningitis.

Did you know …

£5 £10 £50

pays for 143 students to receive a signs and symptoms card pays for two initial calls to our nurse-led Helpline pays for one hour of counselling

Become a regular giver today – sign up through our online form at www.MeningitisNow.org/donate 13

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Will you become a regular giver?

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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 is a 2nd prize of £1,000 as well as 35 other guaranteed runner-up prizes ranging from £20 to £5.

£1

So, sign up now to win great prizes a week and help in the fight to play against meningitis.

Find out more and read full T&Cs at www.MeningitisNow.org/lottery

Winter 2025 issue 3

Thank You to: Brewin Dolphin, West of England team (Bristol and Cheltenham) who chose us as their Charity of the Year, as well as Red Kite Solicitors and Stewarts Law LLP who joined us as official Brighter Future Partners, joining Enable Law and Irwin Mitchell in offering legal insight and expertise.

Amy Goldman and colleagues at Stewarts Law LLP who raised over £1,000 from a 50k running challenge.

Keith Knowles, a Meningitis Now Business Ambassador, and all staff at Beds & Bars and Belushi’s for their support across their annual ‘Live Your Life Week’. They raised £21,182 and handed out over 1,200 signs and symptoms cards across the UK. CORE Special Projects Ltd, for nominating us as Charity of the Year, raising over £5,500 in memory of close friend, Pete Hynes.

Caroline Gardner Publishing for another year of support, which includes donations from the sale of their Christmas cards and cheering on our runners at the London Marathon.

and Bluestone Insurance Services for sponsoring the event for a second year running.

Dignity Plc for £20,000 towards our Believe and Achieve programme and Rebuilding Futures Fund awards for young people.

DP World London Gateway, who donated £31,190.26 from the proceeds of their annual quiz.

The teams from across the UK at Tigerbond who took on the Three Peaks Challenge and raised £8,778 in memory of colleague, Rhiannon.

Source Group International for hosting a golf day in July to raise funds in memory of Primrose Adey.

Turtle Tots for their support for a fourth year running, bringing their fundraising total to over £100,000.

Alison Eddy, a Meningitis Now Business Ambassador, and the team at Irwin Mitchell Solicitors for renewing their support as a Brighter Futures Partner, with a donation of £5,000, and for their sponsorship of our Midsummer Party at The Mall Galleries, London, which raised over £18,500.

Hometrack, who took part in ‘March for Meningitis’, with the aim to walk 10k steps a day throughout May and raised over £2,000.

Easement Solutions Limited for all their fundraising efforts last year, raising over £2,600 in memory of baby Teddy. A big thank you to Jason Everett who took on a 150-mile bike ride in one day, raising over £500.

The Hospital Saturday Fund for supporting our work in Northern Ireland.

Long-standing supporter, Renishaw, for being headline sponsor for our Five Valleys Walk

The Shanly Foundation and BoshierHinton Foundation for supporting our Rebuilding Futures Fund.

All our volunteers and supporters!

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Coming soon!

Here’s a look at some of the events you can get involved in this year.

• Our annual Five Valleys Walk will take place on Sunday 28 September.

• Take to the skies while raising money in our sponsored skydive.

• Signing up to cross the desert in our Sahara Trek 2026.

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