Meningitis Now news Autumn issue 7 2016

Autumn 2016 issue 7

The magazine for Meningitis Now supporters

Research update Steve’s walk

Events calendar Vocal about viral Chelsea garden

Inside this issue 4

Latest news

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Beat it Now!

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Pharmacies and

awareness

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The latest research

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Believe and Achieve

10 Being

vocal about viral

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On the front cover Our cover shows Liam Doyle, one of the young models for our garden sculptures, with his mum Becky, meeting his sculpture at RHS Tatton Park, and some of our other featured sculptures see also pages 4 and 14.

Meningitis Now Fern House, Bath Road, Stroud, Gloucestershire, GL5 3TJ Tel: 01453 768000 Email: info@meningitisnow.org Web: www.MeningitisNow.org www.fightfornow.org

Steve steps out on

marathon walk

14 Growing

awareness at RHS Chelsea

16 Celebrating

volunteers

18 In

your area – Scotland

19 In

your area – Northern Ireland

20 In 21 Saving lives rebuilding futures

your area – Wales

More events

22 Business 24 Events 25 More

news

calendar

events

26 Thank Registered Charity Number (England & Wales) 803016 (Scotland) SCO37790 Company Registration Number 2469130 © Meningitis Now 2016

our

Welcome to News I’m delighted to welcome you all to this autumn issue of news, my first since joining Meningitis Now as Chief Executive in April.

be running our student awareness campaign again this autumn, to encourage as many new students as possible to take up the free ACWY vaccination.

What a fantastic six months it’s been as we continue to mark the milestone of our 30th anniversary year, fighting this devastating disease and working towards our vision of a future where no one in the UK dies of meningitis and everyone affected gets the support they need.

Speaking of ‘massive strides’, I wanted to highlight here the walk our inspirational founder Steve Dayman is taking on next month. Three hundred and forty four miles, over 17 days at about 20 miles a day, visiting towns whose initial letters spell out the word MENINGITIS. If that’s not an effort worthy of support, I don’t know what is – please support him if you can. There’s more on this on page 12.

In particular I have been blown away by the work of our supporters and volunteers. The energy and effort you put into everything you do is amazing and I feel really privileged to work alongside so many committed people. There are too many of you to name here but many of your stories feature on the following pages and I hope everyone finds these as inspirational as I do.

And this issue also includes a look at our beautiful and moving garden at the RHS Chelsea Flower Show, which won the coveted People’s Choice Award – thank you to everyone who voted for it.

There’s more on this on page 14.

As always, thank you for your amazing ongoing support.

With your help we have made massive strides in the fight to beat this disease, although much remains to be achieved. Our Beat it Now! campaign, to see the Men B vaccine introduced free on the NHS for all under 5s, continues, as does our Children’s Voice campaign. We will also

Liz Brown, Chief Executive

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RECEIVE REGULAR NEWS UPDATES For up-to-date news from Meningitis Now, sign up to our monthly eNews here www.meningitisnow.org/support-us/newscentre/e-news-sign-up/

On the right track

News round-up Jacob Gray

Meningitis and septicaemia can kill

Regional rail provider, Great Western Railway (GWR) will be helping to raise awareness of meningitis by including Signs and Symptoms cards with each new railcard issued at Gloucestershire stations.

Know the signs and symptoms Trust your instincts and get urgent medical help

Growing awareness at Tatton Park flower show

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Our award-winning Chelsea garden Two of the young people headed north to grow disease whose statues feature awareness among visitors to in the garden visited the RHS Tatton Park Show in the show, our Young More on Ambassador, Jacob Cheshire in July.

Chelsea, Gray, 24, and 6-year-old page 14 Liam Doyle and his mum Designer John Everiss adapted the garden with sponsorship from Becky. It was the first time Liam North West–based company Laila’s came face-to-face with his statue.

Fine Foods, but retained the sculptures of young meningitis sufferers that Jacob said: “I love the garden John’s were such a talking point of the original created and the statues that convey Chelsea design. such strong emotions.”

Everyone from a 16 to 25 years Railcard holder to those issued with a Senior Railcard will receive a small wallet-sized guide to identifying this life-threatening disease.

Symptoms can appear in any order - some may not appear at all. Someone with meningitis or septicaemia can get a lot worse very quickly. Keep checking them.

MeningitisNow.org

f

@meningitisnow

We’ve published Vision 2020, which sets out our goals and priorities through to the year 2020 – moving us ever closer to our ultimate vision of a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives.

in the UK, we are determined to continue to drive forward with the people we exist for at the heart of everything we do.

Our chief executive, Liz Brown, said: “Among the challenges we face and will be working to overcome are getting a prompt diagnosis – sometimes literally the difference between survival and death. We’ll also focus on the lack of follow up and information following meningitis and the lack of recognition of the ‘hidden’ non-physical impact, meaning that effective support is not accessed.”

As the only organisation entirely focused on saving lives and and rebuilding the futures of people affected by meningitis

Download Vision 2020 from our website.

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@meningitis_now

Meningitis Helpline 0808 80 10 388 (UK) © Meningitis Now 2015. Reg. charity number 803016 (England & Wales) SC037790 (Scotland)

Students risking life by ignoring vaccine

STUDENT CAMPAIGN PAYSLIP.indd 1

Moving forward with Vision 2020

fb.com/MeningitisNow

Vicky Cropper, Community and Events Manager at GWR, said: “Including Signs and Symptoms cards will raise awareness of the disease and the charity to thousands of our customers who travel on the Great Western Railway.”

30/09/2015 14:32

Last winter only a third of those students eligible to protect themselves from a deadly strain of meningitis chose to do so.

25 can also claim the free vaccination, introduced to combat the rise in Men W cases in adolescents.

The low uptake is one reason why we’re continuing our student campaign this year. One way we’re hoping to get the message across is through a range of hard-hitting signs and symptoms beermats, which will be distributed around universities.

Public Health England figures show the MenACWY vaccine was given to just 35% of those eligible in England, leaving thousands of young people at risk.

Although take up was significantly higher in Scotland it means that up to 250,000 have not received the jab.

Teenagers aged 17 and 18 have been eligible to receive the ACWY vaccine for free since August last year. Older first-time university entrants aged 19 to 5

AVAILABLE ON A HIGH STREET NEAR YOU

Campaign to Beat it Now! continues…

At the end of April, Government decided to ignore the wishes of 823,000 people who had signed what was at the time the biggest-ever parliamentary petition, calling for the Meningococcal B (Men B) vaccine to be extended.

High-street pharmacists Superdrug and Boots are offering the Men B vaccine through their clinic services for those who want to get the vaccine privately, at £95 per dose. We hope this will reduce the overinflated prices being asked in some practices.

The Joint Committee on Vaccination and Immunisation (JCVI), who advise the government on policy, announced that extending the age range of children who receive the vaccine through the NHS, would place too much of a strain on current vaccine stocks to be sustainable.

And in mid-July health advisers rejected calls for children up to 2 to be given the Men B vaccine.

Minutes published said “that while the lifesaving Men B vaccine could prove cost effective for children aged between 13 and 24 months, there is insufficient supply of the vaccine to offer it to children in this age group without jeopardising stocks of the vaccine set aside for the existing NHS immunisation programme.”

GIVE US A VOICE Have you signed our open letter to Health Secretary Jeremy Hunt? The letter says “Don’t put cost above children’s lives – please reconsider your decision not to protect children from this deadly and debilitating disease.” #Voice4KidsNOW

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them – about 11,000 around the country.”

“They have a really valuable role to play in supporting communities and reassuring people where there has been a case.

“And they may see people with the after-effects of both bacterial and viral meningitis.”

Susette Worgan-Brown, our projects co-ordinator (left) works on the materials with Rachel

Recognition mark for pharmacies

Meningitis Aware pharmacies will play an important role in raising awareness about the disease by stocking our signs and symptoms cards.

Our new e-learning pack and Meningitis Awareness Recognition Mark for pharmacies is being rolled out this autumn to provide another level of support and care for those fighting back from the disease or needing more information.

The Department of Health estimates that 96 per cent of people in England could reach a pharmacy within 20 minutes on foot or using public transport and each year 84 per cent of adults in England visit a pharmacy at least once.* “Our e-learning materials will enable pharmacists to improve their knowledge of meningitis and provide information and support to people who are concerned,” Rachel added.

“Look out for our Meningitis Aware Recognition Mark window sticker at your local pharmacy.”

Pharmacists are highly trained health professionals and play a key role in providing quality healthcare.

For this reason they were unable to recommend extending implementation of the vaccine to all children under age 2.

Which is why, when we held a ‘blue sky strategy day’ with Pfizer and the idea of an e-learning pack on meningitis for pharmacists rose up the agenda, we immediately saw the potential.

Liz Brown, our Chief Executive, said: “We are hugely disappointed by this decision, but will continue to campaign passionately for all children under the age of 5 to receive this lifesaving vaccine.”

“Pharmacies offer a welcoming environment and people pop into them all the time, for everything from toothbrushes to medication,” Rachel Robinson, our Director of Research and Support, said. “And there are lots of

We’re asking our volunteers to ‘adopt your local pharmacy’ and encourage them to sign up for meningitis awareness – do get in touch with Jean Lawton (jeanl@ meningitisnow.org) if you can help. * Now or Never: Shaping pharmacy for the future, Royal Pharmaceutical Society 7

Getting on swimmingly

Research update

The grant follows a plea from Rebecca to us for funding from our Financial Grants Scheme.

A young meningitis survivor left deaf by his ordeal is learning how to stay safe in the water.

Despite amazing advances in scientific understanding of how to treat and prevent meningitis, the disease still causes death and disability every year. High–quality scientific research is essential in understanding and improving diagnosis, treatment, prevention and outcomes.

We invest in this type of research because it drives innovation and discovery, providing an evidence base for further investment from the pharmaceutical industry and larger funders. We also fund research on vaccine evaluation and implementation, to better inform preventative HELP US strategies and reduce We urgently risk of infection.

We fund high-quality scientific research with the focus on prevention because it is the most effective way of saving lives.

All research funded is excellent quality, original, innovative, high-risk, and of benefit to people living in the UK.

A number of very effective vaccines have already saved thousands of lives.

However, there are still strains and types of meningitis which are not preventable by vaccination or other means, and investment in further preventative research is therefore urgently required.

We review our research strategy on a regular basis and are currently looking at future priority areas for funding.

We primarily invest in early stage research that works towards the prevention of meningitis through vaccine development and refinement, and by improving understanding of pathogenesis (how disease happens) and risk factors for infection. We also Read more on our website at fund research that is focused www.MeningitisNow.org/ on preventing meningitis how-we-help/research through other means.

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need funds to continue our research.

It could be your donation that leads to the next big breakthrough in the fight against meningitis.

Please donate now and help save and change lives.

Archie Gibbons

Each year we award more than £250,000 to those affected by the disease and their families, helping to reduce financial pressures faced following the disease.

We’re funding lessons with a qualified instructor for three-and-a-half-year-old Archie Gibbons, from Wilmslow, to keep him safe in and around the water and help him gain confidence.

Archie contracted meningitis at just a few days old. Fortunately he survived, but the disease robbed him of his hearing and he now needs to use cochlear implants, making communication within larger groups in the pool difficult.

Other ways we help …

• Financial grants are just one of the ways we provide support. Check out our range of free events around the UK for individuals and families affected by meningitis too on our website.

Mum, Rebecca Lister, said: “Archie loves the water and jumping in and is already able to swim from about two metres away to the side.

• With the focus on children up to 16 years old, our free Family Days have become an important part of the support we offer families and have had a huge positive impact on those who attend.

“It’s great to see him having such fun and we’re keen for him to carry on learning, but it’s really important for us to make sure he stays safe.

• Our Believe and Achieve weekends are action and fun packed weekends for young people affected by meningitis. Due to the generous support of Children in Need we are able to offer these free.

“Having one-to-one lessons does that and will help him become a stronger swimmer and experience new situations.”

“I learnt so much and had so much fun at the same time. The tasks were challenging but I was proud to complete them. The best part was meeting other young people who understand the impact of meningitis.”

She added: “We are delighted with the difference the lessons are making and the support we have received from Meningitis Now.” 9

GETTING OUR VOICE HEARD An opera singer helped us make our voice heard for our annual Viral Meningitis Week campaign to get people talking about the disease.

Being vocal about viral Our fourth Viral Meningitis Week, between 2 and 8 May, raised awareness to inform the public, health professionals and employers about the true impact of the disease and the long-term problems it can bring.

headaches, anxiety, depression, dizziness/ balance problems and hearing difficulties.

These after-effects can lead to time off education or work, and a daily struggle with tasks that so many people take for granted.

SO, WHAT ARE WE DOING TO BE “VOCAL ABOUT VIRAL”?

WE WILL: • Continue to raise awareness about viral meningitis • Continue to provide support, including access to complementary therapies • Provide e-learning materials for pharmacists • Encourage healthcare professionals to carry out follow-up appointments • Develop and support further research

We feel that viral meningitis often gets less attention than bacterial and, according to recent research, lots of you feel the same way!

Meningitis and Me was an opportunity to hear directly about people’s experiences of living with the after-effects of viral meningitis. People told us that they experience memory loss, exhaustion,

Expert opinion suggests up to 6,000 people each year across the UK suffer from viral meningitis. Download our free viral meningitis fact sheet from our website.

Don’t face meningitis alone.

Call our Helpline on 0808 80 10 388.

Get in touch to request a copy.

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Jessica-Lauren Butterfield from Halifax, who became ill when she was 22, said: “Because it was viral meningitis, everybody was like ‘oh, you’re fine aren’t you?’, but you don’t feel fine.

Jessica-Lauren Butterfield

“After about day three of being in hospital, I’d not really been told anything about meningitis. They just kind of discharged me – they didn’t give me any information about recovering.

“Then it’s three weeks down the line and you still feel dreadful; and then months down the line I’m still plagued with headaches. I struggled a bit with depression afterwards. I was really struggling with the fact that something so serious had happened to me – it was unbearable to think about.

“You miss what you used to have; you miss being able to do whatever you wanted to do.”

NEW GUIDELINES New guidelines on the diagnosis and management of meningitis in adults were published this year and, for the first time, a section on viral meningitis was included.

“If I have a particularly bad headache I get so panicky and I’ll ring my mum in tears. I’m terrified of getting it again; honestly I can’t even explain to you how scary that thought is.

The guidelines noted viral meningitis is becoming easier to diagnose, helping us get a better understanding of how much occurs in the UK. Despite this it’s thought it is probably under diagnosed and under reported.

“You don’t understand why it’s happened to you, why your life’s been affected so much and why you can’t do the things you used to.

Including viral meningitis in the guidelines is a huge step forward in improving awareness among the medical and research communities.

“I was really fit before; I was really active. That all stopped because I just don’t have the energy.

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Steve steps out on marathon walk Steve Dayman

Our founder Steve Dayman is stepping out on a 344-mile walk this autumn to celebrate our 30th anniversary.

Steve will be walking from Morpeth in Northumberland to Stonehouse in Gloucestershire, visiting towns along the way whose initial letters spell out the word meningitis.

“I’ve been involved with the meningitis movement for over 33 years, since losing my 14-month-old son Spencer in 1982 to meningococcal meningitis,” Steve said. “There were no organisations to represent the disease then, so I’ve dedicated my life to help create a better understanding of the disease.”

He hopes to raise £50,000 during the 17day walk, to take his personal contribution to fighting the disease from walks alone over the last 30 years to £2 million.

Steve became the founding chairman of the Meningitis Trust, now Meningitis Now, in 1986.

Steve’s epic journey starts in Morpeth on Saturday 8 October, He then walks via Easington, Northallerton, Ilkley, Nelson, Glossop, Ibstock, Tamworth and Inkberrow, covering about 20 miles each day, before the final leg brings him to Stonehouse on Monday 24 October our official birthday!

“We were the first charity to address this awful disease,” he added, “and since then we have funded over £12 million of preventative research, distributed over 20 million awareness symptoms cards, taken over one million helpline calls and supported thousands of families who lives have been devastated by meningitis.”

There, supporters will be on hand to greet him back to the town where the charity started, following an outbreak of the disease in 1986.

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It will be veteran long-distance walker Steve’s 33rd walk. He will be walking the route with support from a small back-up team of Phil and Judith Cook and Bob Birstall and collecting donations throughout. Steve will be joined on the walk by supporter Steve Fear and, for parts of it, our Northern Ireland Community Ambassador Carl Monteith.

Local supporters are welcome to join him at the finish of each day’s walk.

“It would be lovely if any schools that I pass would come out and give me a bit of encouragement and cheer me on,” he said, “and I’ll be happy to return another time to give an assembly.

Support Steve: From North to South and East to West; day one in Morpeth to Stonehouse in Gloucestershire on day 17

“But, because of the distance I need to cover each day I won’t be able to stop anywhere for a visit during the walk.”

Day 7: Friday 14 October: Addingham via Nelson to Burnley.

Day 8: Saturday 15 October: Burnley to Ashton-under-Lyne.

Cheer Steve on as he walks, or, if you can’t get there in person, follow his progress on our website and donate if you can at https://meningitisnowfundraising. everydayhero.com/uk/steve-s-30thanniversary-marathon-walk

Day 9: Sunday 16 October: Ashton-under-Lyne via Glossop to Buxton.

Day 10: Monday 17 October: Buxton to Ashbourne.

Day 11: Tuesday 18 October: Ashbourne to Woodville.

ROUTE

Day 1: Saturday 8 October: Morpeth to Angel of the North: Gateshead.

Day 12: Wednesday 19 October: Woodville via Ibstock to Shuttington near Tamworth.

Day 2: Sunday 9 October: Gateshead via Easington to Trimdon.

Day 13: Thursday 20 October: Shuttington via Tamworth to Solihull.

Day 3: Monday 10 October: Trimdon Grange to Dalton-on Tees.

Day 14: Friday 21 October: Solihull to Astwood Bank

Day 4: Tuesday 11 October: Dalton-on-Tees via Northallerton to Baldersby.

Day 15: Saturday 22 October: Astwood Bank via Inkberrow to Bredon.

Day 5: Wednesday 12 October: Baldersby to Beckwithshaw.

Day 16: Sunday 23 October: Bredon to Painswick.

Day 6: Thursday 13 October: Beckwithshaw via Ilkley to Addingham.

Day 17: Monday 24 October: Painswick to Stonehouse.

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The Meningitis Now Futures Garden Determination Jacob. 24, became ill with meningitis in January 2013 and was given just a 10 per cent chance of survival. After a year in hospital he made the decision to have his legs amputated to better his chances of walking independently again, eventually walking out of hospital 699 days after being originally admitted. He now travels the UK, raising awareness of the disease and offers support to other meningitis amputees.

Uncertainty Liam, 6, has battled meningitis since he was a few weeks old. He has suffered a number of attacks of the disease and been left with ongoing after-effects including epilepsy and ataxia. His courage inspires his family to fundraise in his name.

Set in a Cotswold country garden, the Meningitis Now Futures Garden reflects our Gloucestershire-based John Everiss roots. It features a garden folly as its centrepiece, inscribed with our ‘Believe and Achieve’ message, representing the specialist support the charity offers in developing preventative vaccines and rebuilding futures.

Designed by Chelsea and Tatton Park gold medalwinning designer and landscaper John Everiss, the garden is inspired by the spirit and energy of families whose lives have been irrevocably changed by the disease.

A carved stone tableau depicts the Greek god of medicine, Asclepius, and the changing face of medicine over the centuries. To each side of the folly are two walls, one representing the disease and the second the recovery.

Rehabilitation Louise, 19, was 2 when she contracted meningitis. She had to have both her legs amputated through the knee, part of her left arm and parts of her fingers on the right hand.

She uses horse riding as physiotherapy and now rides in the Irish para dressage team. She also raises awareness in schools and colleges.

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Achievement Lauren, 15, was six weeks old when she had meningitis, which left her with brain damage, hearing loss, cerebral palsy and balance difficulties.

Doctors worried about the quality of life she would have, but a tricycle funded by Meningitis Now when she was 4, inspired a love of cycling and she hopes to represent the UK at the 2020 Tokyo Paralympics.

Bereavement Gareth was 16 when he tragically lost his life to meningitis – without showing any signs or symptoms. His family has since completed a number of the world’s hardest challenges, to raise nearly £300,000 for the charity.

Watch Five dramatic sculptures the video of our travel across the garden; Chelsea Journey on one is caught up in the our website at https:// turmoil of diagnosis and www.meningitisnow. hits the first wall; another org/support-us/newspasses through the wall, centre/futuresreaching up for help; and garden/ two others encourage her to overcome the hurdles and embrace her new life. Four are young meningitis survivors, created as laminated cedar wood sculptures. The fifth sculpture depicts one of many lives lost to the disease.

The colours and structure of the planting reflect the turmoil of diagnosis through to the positivity of recovery and new opportunities.

The garden was awarded a Silver-Gilt medal at RHS Chelsea and The People's Choice award. A smaller version featuring the sculptures was presented at Tatton Park.

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Sue in for the long haul

Community Ambassadors get together with staff

Just some of our amazing volunteers

Celebrating our volunteers Over 21 million people volunteer in the UK at least once a year and this contributes an estimated £23.9 billion to the UK economy.

THERE ARE MANY WAYS TO GET INVOLVED: • Raise awareness - spread lifesaving awareness by distributing leaflets and symptoms cards, run an awareness stand at a fete or hospital, or give a talk to a local school, office If you’d like or university. to find out more

Our volunteers bring us closer to our goal of beating meningitis, tirelessly supporting us and helping to raise more funds, please get in touch. more awareness and reach • Event support - represent Email: volunteering@ more people. us at an event near you, or meningitisnow.org at a national event. or call 01453 Because of our volunteers we 768007. are louder with our awareness • Raise funds - attend cheque messages, reaching more people who presentations, carry out a street need us, making change happen, funding collection or a supermarket bag pack. more research and, above all, getting Distribute collection tins. closer to making our goal, where no one dies from meningitis and everyone • Administrative support - volunteer to affected gets the support they need, a make sure our volunteers get the back-up reality. they need.

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Little did Sue imagine when she came along to the Meningitis Now offices to support a friend who was being interviewed for a job that she would still be volunteering with the charity over 25 years later.

or volunteering for us around the country have requested to support their endeavours. These are straightforward but vital tasks – sorting and counting balloons for example, counting money, collating leaflets.

Her friend, Bridie, got the job and persuaded Sue to volunteer for the charity. Really, she was pushing at an open door.

There is some computer work too, but Sue prefers not to do this. “It’s what I do in my day job and it’s bliss to get away from it from time to time – the joy of my volunteering is that it’s such a change from my paid work.

“I’ve never regretted it,” Sue said. “You don’t want to sit at home twiddling your thumbs.

I’ve always volunteered – running Brownie and Guide packs and a local youth club – it’s a good and productive use of time.”

“There’s absolutely no stress; you do what you can and you don’t worry if you run out of time to finish something – someone else will be along to pick up where you left off.

They’re a great bunch of people and a lovely group of friends.

Sue: I get so much out of it

Sue has helped out at the Minchinhampton checkpoint for our flagship Five Valleys Walk since then, only missing a couple of walks along the way. And, since she went part-time with her accountancy job in nearby Stonehouse seven years ago, she has come into our head office in Stroud every Monday between 9 and 1, making herself useful and doing whatever she can to help.

“I love being involved in the Five Valleys Walk but I’ve also been along to a number of other events, including cheering our runners on at the London Marathon and helping out at our Family Days in Cardiff and Gloucester – these are great fun.

“I just get so much out of it, a real feeling of fulfilment and feeling good about myself. And after all, what’s four hours in a week?”

This largely involves working with her friend Caroline to make up our pack orders – putting together the materials that people taking part in our events 17

A ROUND-UP OF EVENTS AND NEWS FROM AROUND THE UK

WHAT’S BEEN HAPPENING IN SCOTLAND? Our volunteers in Scotland have started to form groups to help raise awareness and support each other with their fundraising. One group from the central belt meets every couple of months and another group in the Aberdeen area is just getting going. Regional fundraiser Amanda Harris says: “It gives volunteers the opportunity to feel more involved, have their say and support us .”

Thanks to Stephanie and Michael Reid and the 200 people who attended their charity night of raffles, games and a sponsored beard shave.

The couple’s 2-year-old son Alfie fortunately survived meningitis but they want to prevent their terrible ordeal happening to others. The evening raised £3,200.

Alfie Reid

Ailsa Lister and her dad Tim organised a quiz night in Huntly, Aberdeenshire. Ailsa contracted meningitis when she was a baby. She is now 11 with no after-effects and wanted to give something back. She’s certainly done that, raising £720.

Ailsa Lister

Calum sadly died from meningitis when he was 11, but to celebrate what would have been his 21st, parents Kim and Sinclair held A Wonderful Life Gala Ball. They also ran a competition for authors and the winner was Karin Finegan, who won a £2,000 prize.

Join us for our Scottish Family Day on 1 October 2016 at the Edinburgh International Climbing Centre. For further information contact our Community Support Officer, Nicky Broekhuizen, on nickyb@meningitisnow.org 18

Planning an event in Scotland? Our Community Fundraiser Amanda Ha rris can help. Contact her on 0345 120 4885 or email: amandah@ meningitisnow.org

Thirty participants zipped over the River Clyde in Glasgow, raising an amazing £6,900 for us.

Travelling at speeds up to 40mph, 150 feet up along the 1,000ft challenge was daunting but enjoyable.

One group agreed: “The Zip Line was terrifying, but an amazing experience.”

Walkers got their kilts on to take part in Kiltwalks in Glasgow and Aberdeen.

There were three challenges – The Wee Wander (5 miles), The Big Stroll (12) and the Mighty Stride (26). The general consensus among the 29 participants was that it was “a great, fun-filled and inspirational day.”

Thanks to 13 runners who took part in the Edinburgh half or full marathon in May for us, raising a brilliant £9,000. Many had personal and sad stories behind taking on the challenge.

WHAT’S BEEN HAPPENING IN NORTHERN IRELAND? Thank you to the 1,500 runners who laced up for the tenth anniversary Bann 10K and Fun Run. We were selected as the charity partner for the event, which raised £3,138. A big thank you to Santander too, for the matched funding.

Event organiser and club coach Heather Ardis: said “Meningitis has affected many families across Northern Ireland, including club member Oliver Lewis and his family. As Oliver turns 10 this year, it seemed fitting that as we celebrate our tenth anniversary we also take steps to fight this disease.”

Pupils at Ballywalter Primary School, Newtownards, County Down, have raised funds to fight meningitis by taking part in a ‘Mile of Fun’ along Ballywalter Beach. The whole school took part, with the youngest pupils walking in the morning and the older children braving the ‘bracing’ summer weather in the afternoon!

Oliver took part in the Bann Fun Run with his sisters, Niamh and Clara and mum Karen. His father, Alan, took on the 10K event.

Our regional fundraiser, Jo Wilson, said: “Oliver is such an inspiration to everyone fighting back from meningitis.”

Children at Moira Primary School and Nursery, Armagh, have helped to raise almost £4,000 by taking part in a ‘Zany Zumba’ event. The youngsters dressed up in their finest, colourful, crazy clothing and completed an energetic Zumba session, led by parent Sonia Wilson.

Join us for our Northern Ireland Family Day on 27 November 2016 at the Pavilion Complex Leisure Centre.

For further information contact our Community Support Officer, Lesley Banks, on lesleyb@meningitisnow.org 19

Oliver Lewis

Planning an event in Northern Ireland? Our Community Fundraiser Jo Wilson can help. Contac t her on 0345 120 0663 or email: joannew@ meningitisnow.org

WHAT’S BEEN HAPPENING IN WALES? GET READY FOR CHRISTMAS Have you got your tickets for our 2016 Christmas Celebration Concert on Tuesday 29 November at the beautiful Llandaff Cathedral? It’s the perfect way to get into the Christmas spirit. Visit our website for more information.

Whilst on the subject, eat, drink and be merry this Christmas with a Christmas pudding from Cwmbran Vale Rotary Club and help us with our vital work. The club is supporting us this year through its annual sale of award-winning Ultimate Christmas Puddings, a light, sweet (but not too sweet), luxuriously delicious, celebratory pudding. They’re sold in cases of 12 puddings – one for each day of the 12 days of Christmas! Find out more at http:// rotaryxmaspuddings.co.uk/ ZIPPING ALONG Twenty-seven daredevils answered our call to take part in Europe’s longest zipline challenge in Penrhyn Quarry, Bethesda.

Leah Wynn, our Community Fundraiser, said, “This was the first time we have offered this exciting and adrenalin-fuelled experience at Penrhyn Quarry. It’s a fantastic opportunity to challenge yourself and make a huge difference to the thousands of families affected by meningitis every year. I’m sure we’ll be back!"

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Planning an event in Wales? Our Community Fundraiser Leah Wynn can help. Contact her on 01453 769081 or email: leahw@ meningitisnow.org

Huw Westwood, our Young Ambassador in South Wales, hit the right note when he joined the celebrated duet Cantare at a charity concert.

The 16-year-old young baritone and upcoming singer has been performing with Only Boys Aloud – the world’s biggest boy band – for several years and is now building on his solo performance skills.

The concert, at Porthcawl’s All Saints Church in July, raised valuable funds for our ongoing work as well as raising awareness of the disease.

“The concert was great fun,” Huw said, “and I enjoyed sharing a stage with Cantare – I learnt a lot from them.”

The concert was organised by promoter Judith Shawe, who taught Huw’s mother Alison how to play the piano as she fought back from meningitis. Alison now volunteers for us as a Community Ambassador.

Huw Westwood and his mum Alison

Discover ice, rock and fire in Iceland One of the world’s most diverse trekking areas is situated in the southern highlands of Iceland, the third-biggest geothermal zone in the world. And you can visit it with us next July and spend three days trekking in breathtaking scenery, camping out in the elements in remote wilderness and splashing in geothermal pools.

There are very few places that offer such diverse landscapes and scenic views. Find out more and sign up on our website.

“This was by far my biggest challenge to date,” Keeley said. “But I was determined to do it. If my participation and pain helps save one other life then I’ve done my job!”.

We are thrilled to be able to offer places in this iconic event in 2017. If you’d like to register your interest please email rachelo@meningitisnow.org

IT’S GREAT UP NORTH After months of hard training and fundraising, our fantastic team took on the world’s biggest half marathon – the Great North Run – on 11 September. A massive congratulations to them all – we hope you are proud of your achievement and we can’t thank you enough for your support.

STILL TIME TO JOIN US FOR THE FIVE VALLEYS WALK We’d love you to join us and mark the occasion of our 30th anniversary at our flagship Five Valleys Walk, sponsored by Steppes Travel, on Sunday 25 September. This sponsored walk through the stunning Cotswold countryside has something for everyone; bring your friends, family or your work colleagues along, and even your fourlegged friends.

One person taking part was student Keeley Whitehead, who contracted meningitis and Keeley encephalitis in Whitehead August 2011.

Meningitis left Keeley with mobility issues and she has been a wheelchair user. Keeley took on the course through a combination of wheelchair and walking with sticks.

It’s suitable for all ages and abilities and you can choose your distance, grabbing a free bus ride back when you’re ready.

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Business News Our founder Steve Dayman with Clare Berkely, Bristol & Avon’s Finance Director, at the partnership launch

Corporate partnerships are vital in helping us achieve our goal of saving lives and rebuilding futures and we’re really grateful to all the businesses – big and small – who support our efforts, either through raising funds and awareness or volunteering at events. Meningitis touches the lives of people within wider communities and this resonates with organisations’ staff and customers. If the company you work for would like to join our fight against meningitis please get in touch – we’d love to hear from you.

HERE’S WHAT SOME OF OUR BUSINESS PARTNERS HAVE BEEN DOING …

Thanks to our corporate supporters Bristol & Avon, who were able to get us selected as the Charity of the Year at the hugely popular South Glos Show in August, raising valuable funds and equally valuable awareness.

A team from Bristol & Avon also joined us for the bmi Regional Bristol Harbourside walk, a scenic five mile walk taking in some of the city’s most vibrant and unique attractions. The well-attended event proved a great day out for families and work colleagues.

Benefits to your company • Make a real difference to your communities: Save lives and rebuild the future for individuals and families.

The corporate sponsors of our RHS Chelsea and Tatton Park gardens – we couldn’t have grown so much awareness without you. Main sponsors included Chilstone Architectural Stone, Silva Timber, Central Scanning Ltd and Laila’s Fine Foods. Lots of others volunteered to help raise awareness at the shows.

• Enhance your brand: Create exciting, positive communications, across all platforms, with great stories to tell.

• Create business opportunities: Stand out from the crowd with sponsorship opportunities.

• Inspire your staff: Create pride and motivation through a range of activities and events.

Seven corporates attended our Chelsea Business Breakfast, at which we signed up a new Brighter Futures partner, agreed three amazing awareness opportunities for GPs and junior doctors and Great Western Railway suggested the idea of sending out symptoms cards in travel packs – see page 5.

There are lots of ways for your company to partner with us. They all make a huge difference to people facing the impact of meningitis, whilst helping you meet your business goals. If you’d like to find out more please get in touch by contacting Harry Gardner on harryg@meningitisnow.org

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A Mad Hatters Tea Party for May Mayhem.

Bristol & Avon were instrumental in making us the supported charity at this year’s South Glos Show

Lockheed Martin held a bake sale at the end of May across their three UK business sites, in memory of Euan Barley, their Business Development Manager - Global Airports, who sadly died from meningitis.

The sale raised £600 which was generously match funded by the company.

(including Fame fancy dress and a personal trainer); pub quiz; and boss cross.”

Fourteen members from the Santander Insurance Services Acquisition and Channel Engagement Team (ACE), based in Milton Keynes, took on a 600 mile walking, running, swimming, cycling and rowing challenge.

Lots of organisations signed up for our May Mayhem event, in particular Irwin Mitchell, eZe Talk and Leigh Day really got behind it.

Gloucestershire-based telecoms company Lister Unified Communications wore royal outfits for a party at their offices to launch a mobile phone recycling scheme with one of our Time 4 Tea events, which has a royal theme. “We believe this is a great way to get the message out to our clients, partners and the local community,” said Richard Snell, Marketing Manager at the company.

Caroline Griffin, Marketing Manager at Leigh Day said: “This year we have a dress down day, man vs food challenge, swear jars, quiz, walk to work days, no social media days … it’s a packed programme!”

Eze Talk, the residential and business telecommunications company, fundraised in earnest. “Every one of Eze Talk's employees is involved in May Mayhem” the company’s Victoria Horton said. "Activities included a beanstick challenge; baby's day out; cyclothon

Supporter Kevin Ryan, whose son fought back from meningitis, persuaded his company, QVC, to select us as their charity of the year.

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EVENTS CALENDAR September

December

25 Five Valleys Walk 25 Bristol Half Marathon 25 Ikano Robin Hood Marathon (Nottingham) 25 Windsor Half Marathon 25 Cheltenham Half Marathon

12 Gloucester Christmas Carol Concert

April

TBC Kiltwalk (across Scotland) 9 Paris Marathon 23 Virgin Money London Marathon 28-7 Inca Trail Trek (Peru)

May

October

1 Family Day (Edinburgh) 1-2 Bournemouth Marathon Festival 1-2 Great Scottish Run (Glasgow) 2 Cardiff Half Marathon 2 Tonbridge Half Marathon (Kent) 6-9 Lake District Challenge 8-9 Believe and Achieve weekend (Weymouth) 8-24 30th Anniversary Steve Dayman Walk (across England) 9 Royal Parks Foundation Half Marathon (London) 30 Sheffield Running

February

16-26 Kilimanjaro Challenge

July

All month May Mayhem TBC Newry Half Marathon (Northern Ireland) 1 Belfast City Marathon 6-14 The Great Wall Trek (China) 27-28 Edinburgh Marathon 28 Rock and Roll Liverpool Half Marathon 28 Greater Manchester Run 29 London 10,000

19-23 London to Paris Cycle 27-31 Iceland's Wilderness Challenge TBC Ride London TBC Machu Picchu Student Trek

August

5-14 Inca Trail Trek (Peru) TBC Kiltwalk (across Scotland)

June

November

6 Men’s 10k (Edinburgh) 10-15 Sahara Desert Trek 12-22 As well as 19-29 Vietnam to Cambodia Cycle 25-26 Trident Paranormal (Essex) 27 Family Day (Belfast) 29 Llandaff Christmas Carol Concert (Cardiff)

March

18 Larne Half Marathon (Northern Ireland) 4-14 Vietnam to Cambodia Cycle 12 Silverstone Half Marathon 26 Omagh Half Marathon (Northern Ireland) 24

September

TBC Burnley 10k TBC Ards Half Marathon (Northern Ireland) TBC Kiltwalk (across Scotland) TBC Lisburn Half Marathon (Northern Ireland) 4 Great Women’s 10k (Glasgow) 9-11 Great North Swim (Lake District) 18 Hull 10k 22 Kilimanjaro Challenge 23-25 Three Peaks Challenge

TBC Great North Run TBC Belfast Half Marathon TBC Kiltwalk (across Scotland) TBC Pedal for Scotland (Glasgow) 21 Kilimanjaro Challenge 24 Five Valleys Walk

All year round Mile of Fun Time 4 Tea A Sizzlin’ Summer Party Toddle Waddle 25

Thank you to…

Joe Murray, Jacob Revell and Hamish Kidd,

Little Big Hero: Kimberlyn Dela Cruz, Lee Ruck, Anna Chuicharoen and the other organisers of the Rave ‘n’ Raise Summer Jamm in Epsom – the latest fundraising event in memory of nine-month-old ‘Little Big Hero’ Joél Ruck, who died from meningitis in 2009. Since then his family and friends have determined to keep his memory alive and have raised more than £24,000 for us.

Chipping Sodbury Craft Fair: Furniture maker John Cosens organised a craft fair with donations coming to us, in memory of Wotton-under-Edge teenager Chris Pegler, who died of meningitis in 2010.

The Pegler family held their own fun day to remember Chris too and have now raised over £40,000.

India Blaksley and Millie Roche

India Blaksley and Millie Roche who, despite being inexperienced cyclists, took on a 412 km ride along the Great Ocean Road in Australia and raised a fantastic £10,000 for us. “We were absolutely terrified at the prospect” India said “but it was an amazing experience.

The highs definitely outdid the lows.” Riding hard and with only a couple of backpacks between them, the journey took them six days, with a total elevation climbed of 3,967 metres.

Damion Krska, and the family and friends of little Mia Barton-Bright, who sadly died from meningitis earlier this year. They took part in our Bristol Harbourside Walk, organised an awareness-raising memorial walk and ran stalls at the Cudworth Tea in the Park Gala and the annual Barnsley VW Charity Show.

There have also been cake bakes and there are plans for a skydive!

Faye Burdett Family Day: A fundraising day was held at Teston Park, Kent, in memory of 2-year-old Faye Burdett.

‘Faye’s Day’ was organised by parents and staff of Mucky Munchkins playgroup in Maidstone and included a sponsored Toddle Waddle followed by fun family activities. The day was a great success with a fantastic turnout and an incredible £15,000 raised in Faye’s name. Proceeds go to us and the Evelina London Children’s Hospital.

Lisburn Fun Run: Seven-year-old meningitis survivor, Tianna raised funds for us by taking part in the Lisburn Fun Run. Tianna, mum Kellyanne and big brother, Tyler were joined by staff from Little Scamps After School Club and took part in the run together.

Tianna

Leigh Arms wrestling: Joanne Higham, landlady of Northwich pub, The Leigh Arms, and First Class Wrestling for another day of free wrestling action, raising £900 and bringing their total raised over the last six years to about £9,000.

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Heidi Sansome who took on a London to Paris cycle ride for us, raising a fantastic £3,300 in the process in memory of Simon, the brother lost to meningococcal septicaemia.

Cross India Tuk Tuk challenge: Joe Murray, Jacob Revell and Hamish Kidd, all 20, from Norwich, raised £1,000 for us from their adventure of a lifetime, driving 2,000 miles across India in a motorised tuk-tuk in memory of their friend, Ollie Towler Jones, who died from meningitis.

Rocco’s cycling challenge: Fantastic Year 7 fundraisers at Ribston Hall High School in Gloucester who helped their year tutor raise nearly £2,500 for us. Science teacher Rocco Cerullo, 36, from Berkeley, took on the 100-mile Ride London Surrey cycling challenge for us in July.

Happy birthday Emmanuelle: Many Happy Returns to, probably, our oldest supporter. Emmanuelle, resident tortoise at Oxford’s Regent’s Park College, turned 113 this year and celebrated with a garden party in the college grounds, with those attending shelling out a £4 entry fee towards our ongoing work.

Craig Nelson challenged himself to cover the distance of two-and-a-half marathons in less than 24 hours to raise money for us. Craig completed the 100km route from his home in Tingewick, Buckinghamshire to our head office in Stroud overnight. His efforts raised over £1,100 for us.

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Thank you to…

continued

Robert Parsons or ‘Bionic Bob’, from Stourbridge in the West Midlands, who saw his life changed forever when he lost both his arms and legs Robert Parsons to meningitis at just 18. But now he’s thanked those who helped him when he first became ill and donated to a fund set up to support him by doing his own fundraising for us, taking on a 10k walk.

Children from St Teresa’s School and Nursery, Cleveleys,

Tandem cycling challenge: A grandfather and grandson from Lancashire took part in cycling challenges in memory of Alfie, a young boy who died from meningitis in 2014, raising an incredible £4,000.

Grandfather, Cyril Holland took on the epic journey from Land’s End to John O’Groats to raise funds. Meanwhile, children from St Teresa’s School and Nursery, Cleveleys, including Cyril’s grandson and friend of Alfie, cycled sponsored laps of the playground for every mile Cyril completed.

Bluebell Wood Walk: Our amazing Volunteer Community Ambassador Angela Cloke, for organising a beautiful bluebell wood walk in Angela Cloke Warwickshire, raising an incredible £19,267.14 for us from entrance fees and contributions. We were also able to distribute over 4,000 symptoms cards raising vital awareness. Thanks to the Haimes family too, who own the woodland.

Michelle Bresnahan and A life for a cure for, again, organising their annual hockey tournament in memory of her 16-year-old son Ryan, who died from meningitis in 2010.

Wristbands: Nick Wright for designing and selling wristbands in memory of little Fleur Rose, who sadly died from meningitis. So far he’s raised £4,000.

Isle of Wight Swim: Southampton dad of two, Scott Dawson, 37, who had meningitis as a baby, took on the extreme challenge of swimming non-stop the 60 miles around the Isle of Wight. Scott’s fundraising target is £30,000.

Skydive for Ruby: Connor Clark, 21, a young Melton Mowbray father, took on a skydive in memory of his baby daughter Ruby, who died from meningitis at just eight days old in February 2012.

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