Battle won...

Fervent fundraising

Love is in the air

Welcome to NewsMonumental moment As this went to print, thousands of UK babies are receiving their lifesaving Men B vaccination via the childhood immunisation programme. Whilst monumental, it is bittersweet for many parents who have felt the disease’s devastation, or have babies outside the four-month catch up range. Our commitment continues through Beat it Now! and we pledge to support you wherever possible.

I thank everyone whose determination and support made this possible. Without you there would be no celebrations.

Throughout next year we are commemorating our 30th anniversary, making the most of celebrating our life, but importantly setting our vision for the future. Key to this is launching our five-year Vision 2020 plan. Many of you are helping shape this, either attending CEO Roadshows or doing the critical Meningitis and Me Survey. It was completed by over 1,000 people and

provides valuable insights into challenges faced by those who have experienced meningitis, including those not in touch with us before. This will undoubtedly extend the great research we undertake (pg 10-11) and put a greater focus on fundraising to create a sustainable future.

Inside, we proudly unveil two incredible initiatives – a community-uniting campaign (pg 16) and far-reaching student awareness programme, created to drive Men ACWY uptake and awareness among young people – a difficult to reach group (pg 7). We also celebrate our London Marathon runners (pg 8-9), true love conquering all for TWO couples (pg 13 and 20), our most successful Viral Meningitis Week (pg 14-15), and thank supporters including petite pugs and large lorry firms (pg 18), for every penny raised.

Sue Davie, Chief Executive

On the front cover

Inside this issue

Our cover shows Beat it Now! highlights, from stoic supporters and descending on Downing Street, to awareness trailer tours and petition collecting. We thank everyone who helped to speed up the UK’s first Men B vaccine being free to babies on the NHS from September 1.

Beat it Now!

Latest research

Student awareness drive

London Marathon efforts

Research: View to review

Having a ball and May Mayhem

The city of love

Vocal Viral Week

Wonderful wonderland Topping cakes You are the future

Alexander’s Army abseil Men and meningitis

Pugs and petrol power

Bresnahans' milestone £350k Wrestlers muscle out meningitis

Love conquers Billy’s Birthday Bash smash

Events calendar

Events for all

Gran’s run, young Wellingtons

Look at Lo and Grew go

Poleaxe the disease Fervent for Finlay

Daisy’s vaccine and thank you to…

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Saving lives and rebuilding futures

Meningitis NowFern House,Bath Road, Stroud,Gloucestershire,GL5 3TJ

Tel: 01453 768000Email: info@meningitisnow.orgWeb: www.MeningitisNow.org

Registered Charity Number (England & Wales) 803016 (Scotland) SCO37790 Company Registration Number 2469130 © Meningitis Now 2015

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…but my personal battle continues

Another milestone met…

FATHER of the meningitis movement and Meningitis Now founder Steve Dayman MBE reflects on the news.

Pride of Britain 2014 recipient Steve, who founded the UK’s meningitis cause after losing his baby son Spencer to Men B in 1982, said: “I’m absolutely elated – I’ve waited 33 years since losing my son to the same strain, to hear this.

WORLD LEADING: The UK is the first country to protect babies against Men B via a national health programme (from September 1).

A day before Parliament dissolved for the General Election, the Government announced that price negotiations, for vaccine Bexsero to be free to babies on the NHS, concluded successfully with manufacturer GlaxoSmithKline (GSK).

The landmark news came after independent Government advisory body, the Joint Committee on Vaccination and Immunisation (JCVI), initially said Bexsero was not cost-effective for the NHS, before fresh evidence, including Meningitis Now data, saw this retracted over a year ago. It also came over two years after Bexsero received its EU licence, certifying it safe and effective.

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The UK has one of the world’s highest Men B rates, killing more of our under-fives than any other infectious disease. Bexsero also fights Men W, which has drastically increased in the UK in recent years.

Thanks to supporters’ efforts, we funded early research that led to Bexsero.Although historic, it comes too late for some and we remain here to help.

“They were cutting it fine, but so many lives and much misery will be spared.

“I heard the news late on Saturday night whilst attending a ball marking the 20th anniversary of Tracy Cox's son Ashley's death to meningitis.

“I was staggered to hear a deal was done and that babies would be protected from this killer disease.

“Given the importance, I was asked to refrain from too much liquid refreshment as I needed to join Sue in London early the next morning.

“Sue had the same call and travelled from Lancashire to London overnight.

“What followed can only be described as a ‘whirlwind’ of interviews, questions and probing by journalists, many of whom acknowledged the importance of the occasion.

“Getting from studio to studio was like being part of an air traffic control exercise with Sue and me adopting a holding pattern over London, waiting for the next interview call.

Steve and wife Gloria outside 10 Downing Street

Beat it Now!’s next fight is to see more people vaccinated for free,

especially high-risk group adolescents. We are pressing the Government for an

Adolescent Carriage Study to help inform the vaccine’s use within this age group.

Also, we share a top panel seat with health and research charities, to have a bigger voice in future vaccine implementation.

We need your help with these endeavours.

Our next fight

“Whilst fair to say adrenalin, moment and occasion kept me focused, the overwhelming feeling we’d done it prevailed, providing me with the energy and desire to share this great news with anyone who would listen.

“The future? More of the same. My personal battle with meningitis continues for as long as I’m needed and able to help.”

Beat it Now!

Find out more at https://www.

meningitisnow.org/how-we-help/

campaigns/uni/

Latest research

We are funding a £168,000 project using state-of-the-art DNA technology to discover which bacteria live in healthy babies’ noses and throats.

Imperial College London researchers are investigating whether carriage changes when they receive Bexsero.

UNDERSTANDING Bexsero’s impact on bacterial carriage in babies

Results could increase understanding of this vaccine and inform future immunisation strategies and vaccine development.

We have £1.2 million committed to nine research projects and are reviewing our strategy to identify future research priorities.

Our Scientific Medical Advisory Panel guides our programme, focusing on quality, innovative UK-based research.

Forum fantastically filledSCORES of scientists, clinicians, researchers and experts amassed to ensure our free Research Forum’s success. There were discussions on the latest research issues, at the Royal College of Paediatrics & Child Health (RCPCH), London, in May.

Our research, information and support officer Rhiannon Conner said: “We’re proud to fund cutting-edge, UK-based research towards eradicating meningitis and related septicaemia.

“The forum showcased some of the pioneering research we fund and allowed leading experts to enter lively discussions about research possibilities.

“We’re delighted by its success.”

Speakers included Professors Ray Borrow, Paul Heath and Peter Taylor, and Doctors Mary Ramsay, Jay Lucidarme, Hannah Christensen and Alex McCarthy.

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see pages 10-11

For more

on research

THE DEPARTMENT OF HEALTH announced in June that the Men ACWY vaccine will be offered to all 17 and 18-year-olds and all university entrants, aged 19-25, free on the NHS from August this year, to combat the rise in Men W cases in adolescents.

Sue Davie, our Chief Executive, said: “With the increase in Men W cases among this age group, it is more important than ever for parents to ensure that their children are protected.

“We have developed a highly-focused campaign designed to reach out to parents, grandparents and legal guardians. The campaign, called ‘Off to Uni’ consists of resources including information leaflets, new signs and symptoms cards and branded wristbands, all of which can be easily downloaded or ordered from our website.

“The campaign aims to ensure that loved ones heading off to university this autumn are not complacent about meningitis and take the necessary steps to protect themselves, stay vigilant and seek immediate medical help if they suspect the disease.”

Over 12% of meningitis cases are in the 14-24 age group. Teens and young people are the second most at risk group after babies. University freshers are particularly susceptible.

Our research shows that four of 10 people aged 18-24 cannot name any symptoms, despite 90% hearing of meningitis, and 25% knowing someone who had it.

To build awareness amongst the hard-to-reach group and ensure high uptake of Men ACWY for 17-18 year olds, we have embarked on a new student programme, comprising three core elements:• Engage parents pre- and post-A level

results, to ensure Men ACWY uptake• Distribute awareness materials and

ACWY reminder to places of study• Target students to coincide with

our first annual Student Awareness Week, from October 19

The programme is part of a larger, ongoing initiative to engage educational establishments and students, from primary school to university/college.

Student awareness drive

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We thank the over 100 runners, supporters and volunteers who made our London Marathon campaign successful. Here are some of the inspirational stories.

Tall order to retake titleJean-Paul de Lacy, who defied the odds and multiple cardiac arrests to survive meningitis unscathed as a baby, endeavoured to retake the tallest marathon costume Guinness World Record.

In a homemade 23ft 1in giraffe outfit, Jean-Paul ran London Marathon 2010 for us – smashing the record by 9ft.

The Reading runner ‘endured crawling through tunnels’ because the neck was too high, raising over £2,000.

He said: “I can’t describe how lucky I feel to survive.

“I want to do all I can for Meningitis Now, so no one loses a loved one or sees them suffer after-effects.”

Sadly, Jean-Paul lost the record to a 26ft 2in Blackpool Tower costume in 2012.

So, he extended his animal attire to 39ft, to reclaim the title this year, but organisers deemed it too dangerous.

Jean-Paul reduced it, so could not recapture the record, but still raised around £3,000, finishing in 6:21:27.

It was his fourth London Marathon for us, his second in colossal costume.

London Marathon 2015GIRAFFES, social squads and plucky pensioners among team

Our oldest runner – 71-year-old meningitis survivor Ann Harman had never done any running, but finished the marathon in 6hrs 3mins.

Ann, who finished 31st in her age group and raised over £2,500, said: “The atmosphere and crowds were unbelievable – I’d a big grin all day. It was moving, exciting and joyful. I can’t

Social squad’s marathon effortsNadhim Orfali, whose ‘life changed forever’ after meningitis aged three, has united colleagues to fundraise including conquering the marathon.

The Cardiff resident is profoundly deaf after falling into a coma battling meningitis.

His family called the ordeal ‘the worst time of their lives’.

Plucky pensioner ploughs through first race

believe how many people offered me jelly babies on the way – someone even offered bread pudding.”

The Llandrindod Wells resident contracted meningitis at 65, while celebrating Hogmanay in Glasgow in January 2009. An ambulance rushed her to Glasgow Royal Infirmary with red patches and flu-like symptoms.

Ann, who spent two week in hospital, added: “I’d seizures, stopped breathing and the crash team whisked me away.

“Doctors later said they’d never dealt with a 65-year-old woman with meningitis before.”

Soldiering on, Nadhim attended mainstream schools and university, and has worked at Cardiff Bay-based digital agency Sequence for five years, helped by becoming an expert lip reader.

The software developer rallied colleagues Sarah Scott, Matt O’Keefe, Mohamed Hashish, Jon Stoneman, Richard Baker and Richard Shearman, to form Sequence Runners.

The seven-strong squad’s marathon efforts raised £12,800.

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Reviewing our research strategy

Why do we fund research?Despite amazing advances in prevention, meningitis still kills and causes disabilities. High-quality preventative and impact-reducing research is essential to confining meningitis to history.

Our place in UK medical researchCharities, such as us, play a vital role in advancing medical knowledge. Medical research charities support over 1/3 of publicly-funded UK medical research, averaging over £1 billion per year, in the last six years.

Our current research snapshotOur research focuses on prevention and is currently worth £1.2 million. Projects are developing new meningococcal and pneumococcal vaccines, understanding why people get meningitis, and how to prepare for the UK’s group B streptococcal vaccine.

The key questionWe will continue to fund preventative research, but ask you – should we also fund research into understanding and reducing meningitis’ impact? This could help answer questions such as:

• Can diagnosis be improved?• Are there better ways to prevent

acquired brain injury?• Why do some get viral

meningitis?• What are the best ways

to manage and reduce fatigue?

EVERY five years we review our strategy to guarantee we fund the best research possible

Charities’ unique contribution to medical research. Association of Medical Research Charities (AMRC) 2014

To have your say, call 01453 768000

and speak to our research, information and support officer Rhiannon Conner,

or email research@meningitisnow.org

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“Charities can provide a valuable source

of information representing the patient voice as well as carers,

clinicians and academic researchers… Such links provide the charity with

valuable insights into research, current treatments, experiences and aspirations of patients and medical

professionals, and ability to identify where treatment gaps exist.”The Value of the Patient Voice.

AMRC 2014.

Expert opinionsWe asked our Scientific Medical Advisory Panel, research community experts, and our helpline nurses.

In addition to vaccine development, other suggested areas included:

• Improving diagnostic tools• Better understanding viral meningitis• Preventing and treating newborns• Better ways to reduce impact,

particularly in adults

Supporters’ opinions:Patients and families’ insights often differ to researchers and health experts. Your opinion is key to us successfully developing a new strategy, reflecting the needs of those affected.

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To the city of love, for the love of fundraising

Lovebirds and staunch supporters Chris and Claire Mervyn jetted to Paris for the love of fundraising

Estate agent boss Chris and wife Claire, of Plymouth, ran the 26-mile Paris Marathon for us in April.

Chris’s nephew Caspar contracted meningitis, and colleague Kevin Buckingham’s son Tom, four, is deaf after the disease.

Chris said: “Colleagues ribbed me for taking my wife to one of the most romantic cities to run, but it was for a good cause.

“Thankfully, there was time for old-fashioned romance.”

They raised over £1,000 this year before even landing in Paris.

Chris ran London Marathon 2013, raising £1,800 for us.

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Tackling the longest ride

Capital to capital cyclists keep smiling

Despite aches, particularly to posteriors, eight amateur cyclists from TAM Ethical beat an arduous 300-mile, three-day London to Paris ride.

They did ‘the longest ride we’ve ever tackled’ and, for some, ‘the first time on a road bike’ after a colleague battled meningitis.

We are one of TAM’s charity partners.

Overcoming horrendous headwinds and steep hills, they kept smiling and saying lines like, ‘so, where are we cycling next year?’

Spokesman Christian Holland, who also did Prudential RideLondon for us, said: “We were overwhelmed with relief when we saw the Eiffel Tower.

“Not only did we complete a demanding challenge, but it was for a great charity.”

LONG-SERVING supporter Alison Hobson’s May Mayhem for Meningitis proved popular.

The Yorkshire businesswoman had droves fundraise, using elaborate takes on a ‘31 days – 31 challenges – you decide’ theme.

Alison, whose daughter Lillie-Beth almost died of meningitis aged five in 2008, ran 10 miles every day in May sponsored.

She said: “May was tiring and definitely mayhem – I thank everyone who took part.

“We felt that, through small challenges, we could make a big difference."

Many Meningitis Now staff took part, with events including sponsored exercising, guess the new royal baby’s name and cake making.

We’ll be holding May Mayhem again next year. Details will be on our website nearer the time.

May the force

Chris and

Claire Mervyn

TRACY COX, of Evercreech, marked the 20th anniversary of losing her son Ashley, seven, to meningitis with a ball, raising over £4,000 – taking her total to almost £40,000.

She hosted almost 150 people at the black-tie ball at Evercreech Village Hall in March.

Having a ball pushes haul to £40k

Tracy presented a cheque to our founder Steve Dayman.

She said: “The village supported us – I can’t thank people enough.

“Everyone enjoyed themselves and I keep being asked when we’ll do another.”

Her other fundraisers included football matches and dances.

OUR THIRD-ANNUAL Viral Meningitis Week was the most successful – highlighting the lesser-discussed type and dispelling myths including that it is only ‘mild’.

Vocal Viral Week dispels many myths

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VIRAL MENINGITIS can affect anyone and there are around 6,000 UK cases a year, mainly over summer.

Although rarely life-threatening, its impact on individuals and families is often underestimated.

Symptoms are similar to bacterial meningitis, so our message remains – if you suspect the disease – seek medical help immediately.

Viral meningitis cannot be treated with antibiotics – rehydration, painkillers and rest are crucial.

Most eventually fully recover, but some suffer lifelong after-effects.

Armed with hashtag #Vocalaboutviral and backed by many, including celeb doctor Ellie Cannon, the week (May 4-10) saw sufferers and health professionals share stories and raise awareness.

The week, born after viral meningitis victims’ feedback highlighted similar struggles, launched in May 2013.Our Viral Meningitis Survey showed that

97% of respondents suffered after-effects including:• Depression• Anxiety• Exhaustion• Headaches• Memory loss• Hearing difficulties• Dizziness/balance issues

These force sufferers to take long periods off education and work, and struggle with daily tasks.

Co-organiser Clare Davis said: “It’s vital everybody understands that viral meningitis can be serious, and that sufferers and families highlight it and seek our support.

“Awareness dispels myths that need destroying, so we thank everyone – more people than ever know about it.”

Our viral meningitis services include factsheets, therapies, counselling, peer support and home visits.

For more, or a free symptoms

card, visit www.Meningitis

Now.org

RAF man discharged Paul Case, of Cornwall, was an RAF aircraft technician before viral meningitis in 2011.

After an accident in Afghanistan he was evacuated to the UK and spent three days in hospital. On the second night home, Paul suffered ‘terrible dizziness, headaches and sickness’.

An ambulance took him to A&E. Two doctors said a medicine was behind it, so said stop taking it and sent Paul home.

Paul felt better, but relapsed, so his wife drove him to a neuro specialist, who thought it was viral meningitis and sent him to A&E.

He said: “I spent two weeks at home on a drip and nurses administered medicine twice daily.

“Life has changed dramatically, the RAF medically discharged me and I work part-time due to fatigue.

“I’ve suffered almost constant exhaustion, concentration problems, dizziness, headaches and anxiety."

Personal trainer’s fight back to fitness Charlene Hutsebaut almost died of viral meningitis in 2010, but battled back to health.

The Lambeth lady said: “I was shocked, not realising until after my week-long hospital stay that I could’ve died.

“As I’m active I know my body well, so got checked out swiftly after realising my severe neck and headaches were not normal.”

Charlene found King’s College Hospital doctors supportive, adding: “My year recovering was challenging.

“I had to balance activity and rest, which allowed me to feel healthy and energetic again.

“Learn the signs and listen to intuition, our bodies are great at indicating problems.”

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Alexander’s Army abseil to annihilate awful diseaseJAMIE AND HELEN FAGAN, whose two-year-old son Alexander is brain damaged and needs care after meningitis, created Alexander’s Army to aid us.

Alexander was floppy, lethargic and unresponsive.

Three doctors and a nurse diagnosed a virus and suggested rest.

Jamie, of Whiteley, said: “If we’d done as suggested – Alexander would have died. Sadly, he no longer talks, walks or feeds himself and can only use one arm.

“It’s soul destroying – yet he smiles, has beautiful eyes, intoxicating laugh and still shows unconditional love.”

Doctors finally diagnosed pneumococcal meningitis, put him in a coma and administered antibiotics.

Jamie, alongside 41 family and friends, abseiled 100m of Portsmouth’s iconic Spinnaker Tower in May.

In tribute to Alexander and us, the building shone orange – the charity’s colour – in the evening.

Jamie, who ran this year’s London Marathon in 5:22:06 for us, said: “We know we can’t make Alexander better, but can help stop this happening to another."

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Men and Men-ingitisMATT BARROW, who is deaf in his right ear after twice contracting meningitis, warns that ‘man flu’ could be something worse.

He remembers ‘everything went extremely quickly’ after going to bed with toothache, before waking to be sick in 2010.

Soon, Matt was unable to walk, talk, remember his birthdate, where he was and even his wife.

He was put in a coma for five days and awoke hallucinating.

Matt, of Perranporth, fought back, but meningitis last year helped cause deafness.

He fronts our Men and Men-ingitis campaign urging men with serious flu-like symptoms to seek medical help immediately.

Matt said: “Men often think ‘this won’t happen to me’, but it does."

CAITRIONA CONNOLLY, 20, died of her third meningitis bout in her mum Patricia’s arms.

The third-year Belfast Metropolitan College IT

student phoned Patricia complaining of a ‘bad headache’.

Caitriona collapsed and was rushed to Royal Victoria Hospital, Belfast.

Her condition failed to improve the next day and Caitriona whispered ‘help me mum’.She died shortly afterwards.

Patricia said: “Our lives will never be the same – we’re scarred. Caitriona always put others first – she was loving."

Caitriona’s kidneys and liver helped three ill people.

To mark the 10th anniversary, Patricia, and over 40 family and friends ran the Belfast Marathon for us, before hosting an Alice in Wonderland-themed ball at Titanic Belfast in June.

The Titanic Belfast-based event had a champagne reception, Mad Hatter’s gourmet feast, themed rooms, acts and auction in June.

Our Northern Ireland community fundraiser Jo Wilson added: “People enjoyed beautiful themed rooms, delicious delicacies and fizz, brilliant entertainment and music – while helping us.”

Wonderful Wonderland to wipe out disease

Contact Jo Wilson for bookings p: 0345 120 0663

email: Joannew@meningitisnow.orgweb: www.meningitisnow.org

all proceeds in aid of Meningitis Now

SAT 6th JUNEDOORS OPEN AT 7.30pm TICKETS £60

Come down the rabbit hole and join us at TITANIC BELFAST

for champagne reception, mad hatters gourmet feast, themed

rooms, live entertainment, Dj, auction and more.

Charity ball 2015presents

Black Tie

Jamie Fagan with son

AlexanderMatt

Barrow

Caitriona Connolly

SCOTTISH acquired brain injury experts and an MSP enjoyed Community Ambassador Margaret McLaren’s awareness day.

Margaret, of Glasgow, united music therapists, home care specialists and charities at the city’s Grand Central Hotel-based event, sponsored by lawyers Digby Brown, in June.

Our Scotland community support officer Debbie McKinnon frantically finished 100 cakes, with My Cupcake Toppers-donated tops, in her hotel room, which caught MSP Siobhan McMahon’s eye.

Cakes top off awareness event

WE PROUDLY launch Rebuilding Futures Communities to engage entire areas to fundraise, raise awareness and support.

To aid communities, we offer full support, communications and presentation training. Initially, Community Ambassadors will lead projects in their areas, before we launch in locations such as Northern Ireland, Scotland, Bristol, Birmingham, Cambridge, Leeds, London, Manchester, Newcastle, Sheffield and Southampton.

To join or for more, call 01453 768000.

You are the future

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Cornwall Pug Club invited people to ‘hug a pug’ to raise pounds.

Armed with plenty of pugs, they took to Truro’s streets after University of Manchester student Teygan Sugrue, 19, of Cornwall, died of meningitis.

Organiser Kate Turner, whose son Ben, 16, survived meningitis, called it ‘brilliant’ that many donated to cuddle the canines and take symptoms cards.

She said: “Ben’s battle in 2013 brought home that it isn’t just children at risk.

“We know we’re lucky that Ben is ok.

“My heart goes out to Teygan’s family and we hope to help the charity in his memory.

“As both families are club members, it seemed ideal to involve the dogs.”

Our founder Steve Dayman dreamed of driving lorries after leaving school at 14 and owned a family-run haulage company, before starting the UK’s meningitis movement after losing his baby son Spencer in 1982.

So, he was in his element meeting top South West transport company Bristol & Avon Group, to launch a £100,000 fundraising partnership.

The Bristol-based company has brightly branded a lorry and pledges £1 for every load it carries in 2015.

B&A hope to raise £10,000 this year, and £100,000 with suppliers and customers’ support – our biggest corporate partnership.

Steve said: “We’re grateful for B&A’s generosity.

“Money raised helps us and the bright vehicle spreads awareness."

Michelle and John Bresnahan, who lost their son Ryan, 16, to meningitis in 2010, surpassed £350,000 for us through their 'A Life for a Cure' campaign.

Sporty Ryan, of Bristol, who ‘lived every moment to the full’, complained of stomach ache and still felt ill the next morning. Within an hour of waking, he was unconscious.

Despite hospital doctors’ efforts – nothing could be done.

Michelle said: “Our lives changed that day. I thank everyone who has helped, from emotional support to fundraising.

“Every penny raised goes to the ultimate cure – eradicating meningitis.

“We are comforted by celebrating his life and turning tragedy into positivity.

“We believe Ryan would be proud.”

They funded ground-breaking research, which saw hundreds of students inoculated with friendly nasal droplets, which could stop meningitis-causing bacteria.

Sticking it to meningitis

Hockey players united for a tournament to stick it to meningitis and remember Ryan.

The mixed-team competition, at Ryan’s former school Clifton College in May, included a best fancy dress prize, barbecue, cakes and raffle.

Michelle added: “It encompasses everything Ryan loved – hockey, competition, fun and all ages uniting to play sport.”

Pug power produces pounds

Keep on trucking

Wrestlers muscle out meningitis

Couple’s crusade tops £350k Ryan Bresnahan

Powerful wrestlers grappled to get to grips with meningitis to remember a ‘terrific toddler’.

Jo Higham, who lost her three-year-old niece Jessica Barbet in 2005, hosted her fifth-annual wrestling fundraiser at her pub, Leigh Arms in Little Leigh, Cheshire. Jo said: “Over the five years we’ve

raised a phenomenal £6,000 – it unites for a brilliant cause.

“It’s great fun and popular – everyone dug deep.”

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September27 Five Valleys Walk, Stroud

October11 Royal Parks Foundation Half Marathon

November14-24 Cycle Vietnam to Cambodia

19-24 Sahara Desert Trek

December1 Llandaff Cathedral Concert

10 Gloucester Cathedral Concert

2016 February5-14 Patagonia Trek

April3 Marathon de Paris

10 Trekking Training Weekend, Stroud

24 London Marathon

JuneTBC Great North Swim

24-26 Three Peaks Challenge

July24-26 Trekking Training Weekend, Stroud

AugustTBC Ride London

SeptemberTBC Great North Run

25 Five Valleys Walk

October6-8 Trek the Lake District

TBC Royal Parks Foundation Half Marathon

New events / All yearGreat North Swim • Tough Mudder

Toddle Waddle • Royal-themed Time 4 Tea

For other events, including regional runs and skydives, contact your community fundraiser – see page 28.

2015-2016EVENTS CALENDAR

THE ONCE 19-stone Lancashire lad almost died within hours of contraction in January 2013 and spent nearly two years in hospital.

He lost around half his bodyweight, faced induced comas, organs shutting down, blood transfusions and blackened feet.

His family, friends and girlfriend Summer Whittaker stayed bedside.

Jacob had a 10% survival chance and doctors said ‘if he survived, he’d be disabled.’ But to everyone’s surprise he rallied.

Jacob, who ‘enjoyed feeling sand between my toes’, chose to lose his legs to avoid more pain.

At our quarterly team meeting, he said: “It was a hard choice – at first.

“I chose to lose them to spare further agony and because they couldn’t hold me. You wouldn’t believe it – but I’m better for it.”

Jacob, who just became a Meningitis Now Young Ambassador, continued: “I thank the charity. Without you funding Summer’s trips to hospital and deposit on my altered car – we probably wouldn’t have made it as a couple."

He promised to propose to Summer if he could walk over 10 steps and, thankfully, she said ‘yes’. He plans to walk down the aisle at a date to be announced.

Sukh Hamilton, who lost her son Billy to meningitis, marked his 18th birthday with her first fundraiser – raising £8,700 – smashing her £1,800 target.

THE SOUTHAMPTON resident hosted Billy’s Birthday Bash dinner and dance.

Sukh said: “Billy, who loved his family and friends, Star Wars, Pokémon and Lego, is much-loved and remembered by all lucky enough to know him.”

Meningitis Now plays Cupid

Billy’s Birthday Bash a smash

Jacob Gray, who lost his legs to meningitis and septicaemia, believes that without us his relationship would have ended – instead of turning into marriage.

Jacob Gray with fiancé Summer Whittaker

Callum Jones, Enya Boyce, Jemma Farrell and Louise Greer join Jacob Gray as Young Ambassadors.

Ian Watkinson (Huddersfield), Unison president Lucia McKeever

(Armagh) and Lynette Adjei (Birmingham) become

Community Ambassadors.

New ambassadors

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Events for everyone: tea parties to endurance adventures

Slip on your shoes to save lives

THERE IS still time to sign up for our annual amble – Five Valleys Walk – around the Cotswolds, in partnership with Connexus.

The flagship, 21-mile sponsored stroll on Sunday, September 27, has nine checkpoints, so people and pooches can choose their distance.

Participants can set off from any checkpoint and catch a free Stagecoach bus back to their start. Family entertainment including a circus, live music, face painting and refreshments line the route.

The top individual fundraiser wins a Bristol Balloons champagne hot air balloon ride.

Organiser Lydia Reed said: “There’s something for everyone and you’ll help us with every step. It’s a social stroll with music, food and drink, but competitive people can go the distance.”

Registrants receive a welcome pack, sponsor forms, route map, certificates, and free fruit and water on the day.

To register or for more, visit www.fivevalleyswalk.com, www.facebook.com/MeningitisNow, #5VW, or call 0345 120 4530.

Dive in for a whale of a timeDIVE IN to fundraising with a free 'Under the Sea'-themed Toddle Waddle.

Children (and young at heart) can organise a short stomp when and where they want, and plunge imaginations with the aquatic theme.

It is perfect for nurseries, schools, child carers, babysitters – anyone looking after children.

Registrants receive a free pack including posters, stickers, sponsor forms and certificates, to aid an engaging day.

Co-ordinator Lydia Reed said: “Our flagship children’s event helps us continue our lifesaving work.

“Sadly, over half of meningitis cases are in under-fives.

“Organising a waddle is a doddle – children will have fun, learn and be active – while

helping us.”

To dive in or for more, visit www.toddlewaddle.co.uk or call 0345 120 4530.

O come all ye faithful

OUR CRACKING Christmas Celebration Concert is at Gloucester Cathedral on Thursday, December 10. Chief executive Sue Davie said: “It’s a warm, inspiring way to get into the festive spirit. We hope you join us for a special programme in a beautiful setting.”

People can remember those lost to meningitis, around a Christmas tree adorned with white ribbons.

Doors open 7pm for 7.30pm start. Advance tickets cost £5 side aisle, £10 nave, or £8 and £12 on the night. For tickets and more, call 0345 120 4530, email christmas@meningitisnow.org or visit www.meningitisnow.org.

Host royal revelries and win the glitz of The RitzWE CORDIALLY invite you to host royal-themed Time 4 Tea.

Organise sovereign-themed soirées, from discos, balls and children’s fancy dress days, to workplace events, garden parties and baking competitions, when you wish.

This year’s top fundraiser wins afternoon tea for two at The Ritz London.

Co-ordinator Helen Whatmore said: “Why not dress as kings, queens, children as little princes and princesses, or bake royal cakes such as Victoria Sponges, Battenberg Cakes and royal icing-topped treats.”

Sign ups receive a free pack including decorations, paper crowns, balloons, invitations and coasters, so parties are crowning achievements.

There are recipe cards and gallant game ideas such as Pin the Tail on the Corgi and Hunt the Crown.

Please send us photos of events. To sign up or for more, call 0345 120 4530, email HelenW@meningitisnow.org or visit www.time-4-tea.org.

Don’t miss our Wales Christmas

Celebration Concert at Llandaff Cathedal

in Cardiff on 1 December.

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More going the extra miles

Grandmother’s 25 years – 25 races JANE EVANS, of near Portsmouth, celebrated 25 years and 25 races with her final Great South Run, for us.

Jane, 65, said: “It’s been an emotional and fulfilling journey.

“It’s sad to end, but I’m happy with how it went and the amount raised for good causes.”

Jane started running aged 40 in 1991, when the second Great South Run moved to Portsmouth.

She said: “At the time, my children were Navy cadets and needed cash for a minibus. A few parents began fundraising and it went from there.”

Jane chose us because we supported her niece Mechelle Lake, who almost died of meningitis aged 18.

Mechelle, now 37, is fine, but never forgot our help.

Jane added: “We’ll never forget and I can’t think of a more deserving cause for my final year."

Young Wellingtons’ whopping windfall YEAR 6 from Wellington School, Ayr, left our Scotland community support officer Debbie McKinnon ‘dumbstruck’ by handing her £27,000.

Around 40 children held fundraisers including a Wellington Wade, Ready Steady Cook-style event, Christmas Fair and calendar sale, from October to June.

Overcoming being ‘dumbstruck’, Debbie said: “I was shocked, but it’s a day I’ll treasure forever.

“Through a lump in my throat, I explained how much the money means to us.”

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Jane Evans with her medals

Kim Lo runs 300 miles in a year for us

DESPITE LOSING her toes, finger and almost her life to meningitis,

and being told ‘she won’t win any races’, Kim Lo is tackling over 40 races – over 300 miles – in a year for us.

Kim was 18 when she fell ill, but A&E sent her home. The

next day, Kim, of Haywards Heath, could not move her feet and had a rash.

The 35-year-old said: “The rash spread and darkened

– my feet hurt more. I asked if it was serious – the nurse said it’s definitely not meningitis. My neck didn’t ache and I could stand bright light.” Hours later, an ambulance rushed her to A&E.

After the amputations, Kim wondered whether she could return to her love, running. A consultant said: "Yes, but you won't win any races."

After weeks on crutches and in a wheelchair, Kim started running, a mile of Pennine Way with a nurse who cared for her. She began to win, set personal bests and managed two marathons, with a running club’s help.

Kim added: "The adrenalin and buzz outweighs the pain."

Tackling miles MUM-OF-FOUR Janet Grew and friend Brenda McGivern are tackling many miles for us.

“I started running to help me with the stress of having a sick child and I have found it very therapeutic. When I'm struggling I think of Sophia and all the pain she has been through and I know what I might be suffering is nothing.”

Sophia was born five weeks early and diagnosed with viral meningitis. She had major organ failure including heart, lung and liver failure and she also developed septicaemia. Sophia looks healthy but she struggles daily with the after-effects of meningitis.

“We started fundraising initially for the hospital that cared for Sophia and then for Meningitis Now. We have raised about £28,000 in total so far.

“My first race was as part of a team in the Belfast Marathon in 2014. I then went on to several half marathons including Belfast and Edinburgh. Brenda and I ran the London Marathon and my husband Jim and I plan to run The Great North Run and the Paris Marathon.”

Look at Lo and Grew go!

Follow Kim at https://

whyirunthisbody.wordpress.com

Thank you to…

Adam Bailey, of Sheffield, who ‘feels lucky to survive’, family and friends for organising a fun day and football tournament.

Adrian Wilding, of Preston, family and friends for raising over £1,250 enduring a second 24-hour snooker tournament to remember his partner and mum-of-one Donna Heyes.

Cavaliere Ristorante, Dalkeith, for sending symptoms cards with deliveries during Viral Meningitis Week.

City of Norwich School for raising £2,085 to remember Ollie Towler, who died in summer 2014.

Ellie Winter, of Christchurch, despite a broken toe, running her first race, London 10,000, to remember best friend Lauren Downey, who died earlier this year.

Joanne Mills and Dave Fleming, of

Lancashire, for raising around £11,500 to remember son Alfie, two, who died last

November.

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Jenny Bennett is remembering her ‘loved and loving, caring boy’ Finlay, eight, who died of meningitis last year, by fundraising for us and other causes.

Her Fundraising for Finlay included a Mother’s Day raffle, bucket collection, quiz, 5k Colour Run, Forth Road Bridge Walk, Girls’ Indian Dinner and Time 4 Tea, from March to August.

Jenny, of Dunfermline, said: “Finlay combined cheeky humour with sensitivity and sense of right and wrong.

“It’s consolation, albeit little, that his too short life inspired laughter, fun, adventure and thought-provoking questions. He’s missed and we fundraise to help the fight in his name.”

Emma Cowey, whose baby Jamie died of meningitis after suffering

‘massive heart attacks’, and her

friend Danielle Ross, held a pole dancing-themed

night to poleaxe the disease.

Family and friends were ‘devastated when the wee boy died’ in November 2004.

Doctors said Jamie could not fight anymore and the next time his heart stopped, the family should let him go.

Emma said: “Everything went fast, Jamie was still living – he’d waited for us. We watched his heart slow, nurses put him

in our arms and we held him tight.We told him ‘be brave’ and kissed his tiny head before Jamie’s heart stopped again.”

The family ‘find strength’ and ‘feel his name lives on’ supporting us.

The Derry duo organised Jamie’s Night for Meningitis Now, which included pole dancing lessons, an auction and disco at Gransha Social Club, Derry, in June.

Emma added: “We don’t want anyone to feel the pain of losing someone to meningitis.

“I thank Danielle for organising the popular ‘pole lot of fun’ – she deserves recognition.”

Fervent fundraising for Finlay

Night to poleaxe the disease Daisy gets vaccineThe baby granddaughter of Dr Jane Wells, UK meningitis movement co-founder, is one of the first to get the new Men B vaccine.

Daisy, born May 29, will be immunised with Bexsero as part of the Government’s four-month catch up programme.

Dr Wells MBE co-founded Parents Group Act in 1985 which became Meningitis Trust, now Meningitis Now, after her son Dan twice contracted the disease.

She said: “Meningitis is prominent in our family – we’ve experienced three deaths and Dan survived twice, so were worried for Daisy.”

Dr Wells, 58, of Stroud, continued: “The vaccine comes after years of campaigning. I’m humbled Daisy qualifies for Bexsero – but it comes too late for many.”

Dan contracted HIB aged two in 1984 and Men C aged 13 in 1995.

“Dan’s first bout completely changed our lives. We were in a dark hole – no one could tell us anything – little was known about it.

“When he contracted it again treatment and recognition had improved.” added Dr Wells.

For Community Support contact Steve Ferbrache. Tel: 01453 769026Email: stevef@meningitisnow.org

For Community Fundraising contact Helen Whatmore. Tel: 01453 769067Email: helenw@meningitisnow.org

Thank you to…

Marion Smith and Jim Porthouse (retiring fundraisers) of Plympton, for raising £11,275 from 14 years of garden parties, after her son Phillip and ex-brother-in-law Peter Kitchen survived meningitis.

Karen and Steve Pegler, of Wotton-under-Edge, family and friends for raising over £35,000 to remember son Chris, 18.

James and Petra Stunt (nee Ecclestone) for donating £50,000, to fund The Fastest Hour film and symptoms cards in Bounty Packs.

Jason Trigg, of Saffron Waldon, for raising around £5,000 by shedding seven-stone and doing the Hampton Court Half Marathon, after family and friends fought meningitis.

Garfield Weston Foundation for £50,000 towards supporting more

people. The Foundation has donated £154,000 to us since 1991.

Jodie Withyman, of Clevedon, for raising over £300 running the Brighton Marathon after surviving meningitis.

Nationwide Milton Keynes for supporting survivor Bahman Jamalaldini by raffling a hamper and raising awareness.

Paul Jarvis, of Brixworth, for raising over £10,000, from fundraising at work, Network Rail, to cycling over 400 miles with friends, to remember son Jonty.

Hannah and Jamie Smart, of Bristol, family and friends, for fundraising to remember daughter Kelsey, five. They have held walks, collections and balloon releases.

Molly Sheppard, of Amersham, for raising £481 from her capital to country bike ride.

Waitrose Morningside, Edinburgh, for donating £500.