News magazine issue 8 spring 2017

Spring 2017 issue 8

The magazine for Meningitis Now supporters

Make viral visible Latest research Steve’s new walk

Corporate support Image by: Jon Bastin

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May Mayhem!

Inside this issue 3

Latest news

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Make viral visible

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Corporate News

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Research latest

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Trust and Grants

10 Events 12 Thank

you

On the front cover

Welcome to News Welcome to this issue of News, and our first as an online-only magazine. We’re no longer producing the paper-based version of the magazine but we’ll continue to bring you the latest news about what we’ve been doing and what’s coming up every quarter online.

As many of you will know Rachel Robinson has been holding the Chief Executive reins over the last few months whilst we recruit a new person. I’m delighted to say that this process is now complete and we’ve appointed Dr Tom Nutt to the role (see page 3). The skills, experience and dedication he brings with him will I’m sure be a great asset to the charity moving forward.

I’d like to wish Rachel well for the future and thank her for everything she’s done to keep us moving towards our vision of a future where no one in the UK dies of meningitis and everyone affected gets the support they need to rebuild their life.

Enjoying our Five Valleys Walk – photo by Jon Bastin. For more on this year’s event and to sign up – see page 10 or here.

As always, thank you for your amazing ongoing support.

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 Dayman, Executive Founder saving lives, rebuilding futures

Registered Charity Number (England & Wales) 803016 (Scotland) SCO37790. Company Registration Number 2469130 © Meningitis Now 2017

Latest news New Chief Executive appointed We’re delighted to confirm the appointment of Dr Tom Nutt as our Chief Executive.

to lead the organisation. His skills and experience, particularly in the area of the voluntary sector, healthcare policy and senior leadership, will add strength and significant value to our work into the future.”

Dr Nutt is currently chief executive at Healthwatch Essex, a county-based organisation which helps people access, understand and navigate the health and social care system. Prior to this he held a number of senior roles within local government, covering health strategy and policy development, voluntary services and finance and change management. He also has strong research and academic credentials having been a Research Fellow at Cambridge University.

Dr Nutt added: “It is a real privilege to be selected to lead Meningitis Now. I recognise the enormity of the task ahead and look forward to the opportunity to lead an extraordinary team delivering outstanding results in meningitis prevention and supporter care.”

Alastair Irvine, Chairman of our Board of Trustees, said: “I am delighted that Tom will be joining the Meningitis Now team

Dr Nutt will take up his appointment in June 2017.

Petra Stunt Foundation launches Petra Stunt has been an Ambassador for Meningitis Now for nearly eight years, having had viral meningitis herself as a teenager.

Foundation (see www.petrastuntfoundation. com). The Foundation’s focus is on autism and meningitis. Its meningitis work will be carried out through Meningitis Now as a partnership, with the Foundation providing funds to support agreed awareness and support activity.

She has supported our work through, for example, funding the symptoms cards initially and providing start-up funds for our Young Ambassador Programme. When Petra married James in 2011, she also asked her guests to give us a donation and this raised over £170,000.

“Petra has been a good friend of the charity for many years now” our acting Chief Executive Rachel Robinson said. “We welcome the formalisation of this close relationship through the Petra Stunt Foundation and look forward to working with her ever more closely to achieve our shared vision.”

Petra, the daughter of Formula 1’s Bernie Ecclestone, has now set up her own 3

As seen on TV Sharp-eyed television viewers may have spotted a couple of our supporters on the small screen earlier this month.

no prizes, and no winners or losers.

Mason was invited to appear after producers discovered he is one of the youngest members of MENSA, the ‘largest and oldest high IQ society in the world’.

First up with a cameo role on the popular Sunday evening Call the Midwife programme was Harmonie-Rose Hall, the Bath youngster who lost her limbs and the tip of her nose to meningitis. She was one of several tots playing in a nursery.

“He totally loved the whole experience”, said dad Craig. “I think what people will get from the show is how Mason is just a normal five year old, with a brilliant personality.”

You can see the video here and read Harmonie-Rose’s story here.

Next up was gifted 5-year-old Mason Bennett, who has overcome meningitis twice in his short life.

He had a taste of the showbiz lifestyle on the new ITV show ‘Little Big Shots’ hosted by Dawn French – and he liked it!

Mason’s achievements are even more extraordinary considering that at just six months old he contracted meningitis. After three weeks in hospital fighting the disease Mason recovered and was allowed home.

Just a few weeks later Mason became ill again.

The premise of the show is to celebrate talented children, showcasing their skills in the name of fun – there are no judges,

Craig added: “We feel blessed every day to still have Mason after we could have lost him twice.”

Steve stepping out again

he will take on the 201-mile coastal walk between Londonderry in the north to Rostrevor in the south-east. Steve hopes to raise £25,000 during the nine-day walk, which starts on Saturday 27 May.

Our founder Steve Dayman is stepping out on another long-distance walk to raise money to fight meningitis.

Last autumn he walked the length and breadth of England, from Morpeth in Northumberland to Stonehouse in Gloucestershire – 344 miles over 17 days – and hit the £2 million raised from walks alone in the process.

Steve says this will be his last walk, which follows the route of his first walk – 25 years ago. Please support Steve if you can. Donations will be collected throughout the walk or you can sponsor him here.

Now he’s off to Northern Ireland, where 4

Sell out ball success Walk in Rubie’s memory raises over £5,000

A glamorous masquerade ball to celebrate the life of a Barnsley toddler and raise funds was a sell-out success.

Rubie’s Memorial Walk 2016 raised an amazing £5,242.33.

Mia’s Masquerade Ball was organised by her parents Becky Barton and Matthew Bright and helped contribute to the £22,273 the family has raised over the last year.

This was the second walk in memory of Rubie, who was just six weeks old when meningitis took her life. In total the family has raised over £10,000 from both walks, which take place on The Manifold Way in the Staffordshire Moorlands.

Supporters can walk, run or cycle the route. One supporter, Dorothy, did the entire 17.5 miles in bare feet - over 38,000 steps!

This year’s walk already has a date of 23 September and Russ and Kerry, Rubie’s parents, are also organising awareness days and Rubie’s Raffle, which will be drawn in May. For more information email RubieJane6@hotmail.com

They’ve also been raising awareness through interviews with national and regional television and newspapers.

“We set up bag packs, tombola stalls, sky dives, sponsored walks and visited our local doctors’ surgeries and handed out over 15,000 signs and symptoms cards to spread awareness of the signs and symptoms in our community,” Becky said.

For more on Mia’s story see the video here.

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Making viral visible Our fifth annual awareness week on viral meningitis takes place in May and again we’re driving home the message about the true impact of the disease and the longterm difficulties it can bring. Please help us if you can by sharing your viral meningitis story here.

This year’s core message is ‘Make Viral Visible’. Susette Worgan-Brown, our Information and Projects Co-ordinator, said: “This seemed to capture the thoughts about viral meningitis being invisible both in terms of its significance compared to bacterial meningitis and, more importantly, the often invisible and yet significant impact it has on people’s lives.”

Did you know that up to 6,000 people each year across the UK suffer from viral meningitis?

Download our free viral factsheet here.

FOR THE WEEK WE WILL: •

Continue to raise awareness about viral meningitis;

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Continue to provide support, including access to complementary therapies;

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Encourage healthcare professionals to carry out follow-up appointments;

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Call for further research;

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Encourage individuals to learn the signs and symptoms; and

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Encourage businesses and educational establishments to learn about the impact of viral meningitis on staff and students by downloading our fact sheets.

Don’t face meningitis alone – call our Helpline on 0808 80 10 388.

Amanda's story Thirty-four-year-old Amanda Buckland from Norfolk, first contracted Mollaret’s meningitis – a recurring viral form of the disease – in December 2012. She had excruciating headaches and days later woke up in hospital, blind and confused. Fortunately Amanda’s sight returned after about three weeks. “I am still battling to get my life back”, she said. “At my worst I slept all day, every day and was virtually lifeless. But I am not going to let this take over my life.” The recurring nature of her illness made it difficult for Amanda to return to work. Thanks to support from us and Attleborough Lions Club she’s now set herself up as an independent beauty therapist, which gives her the flexibility she needs to work when she can.

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Corporate news Marg Randles, Managing Director of Busy Bees, added: “We’re committed to supporting a charity that helps families and young people and for us, Meningitis Now is a cause we’re passionate about.

Members of staff across our nurseries nationwide are preparing a range of exciting fundraising events for our children and parents, which we hope will make a real difference to children, young people and their families across the UK.”

They’re the Bees Knees!

Busy Bees, the UK’s largest provider of quality childcare, has announced that it will be supporting us throughout 2017.

The money that Busy Bees raises this year across its 268 UK nurseries will make a substantial contribution to the £3 million that we need to continue our lifesaving work, including ground-breaking research projects, family support services and community awareness campaigns.

Bags of help We’ve teamed up with Bags of Help and Great Western Railway (GWR) to turn people’s unwanted clothes into cash.

Eye-catching bright orange clothing banks have been sited at railway stations in Stroud and Gloucester and we’ll receive £250 per ton of clothing donated.

Steve Dayman, our Executive Founder, said: “We are very excited about the prospect of working with Busy Bees and the opportunity it offers to inform staff and parents about the importance of knowing key meningitis signs and symptoms.

May Mayhem!

“The commitment Busy Bees are making to pilot our Meningitis Awareness Mark programme within their nurseries will act as a beacon of excellence for all pre-school groups, across the UK, as it defines a clear standard of meningitis knowledge that will become the mark of assurance for parents entrusting their children to this type of childcare."

We’re encouraging companies to sign up for a month of mayhem in May. “May Mayhem is all about having fun in the workplace whilst holding as many fundraising activities as possible,” explained Harry Gardner, our Corporate Account Executive. We’ve produced a pack of ideas to help get you started.

Find out more and sign up here.

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Research to create an impact Two new research projects we’re supporting have the potential to have a major impact on fighting meningitis. Our Research and Information Adviser, Jane Blewitt, explains what’s being done and why.

Existing vaccines are based on these capsule sugars and prevent disease caused by some, but not all, pneumococcal strains.

All strains of the pneumococcus have potential to cause disease and strains not covered by existing vaccines are becoming more common. More effective vaccines that will protect against all pneumococcal strains are urgently needed. Prevention of disease through vaccination is the most effective way of saving lives.

The first project, Understanding the role of bacteria in the body, led by Dr Rachel Exley and Prof Christoph Tang of the University of Oxford, is examining how a harmless bacterium can influence disease caused by N. meningitidis, a bacterium responsible for meningitis and septicaemia.

The second research project, Improving protection against pneumococcal meningitis, carried out by Prof Aras Kadioglu, Dr Marie Yang and Dr Dean Everett at the University of Liverpool, will work towards developing a better pneumococcal vaccine. Previous research, by the same team and funded by Meningitis Now, enabled the identification of specific proteins that could be used in a new vaccine to provide protection across all pneumococcal strains.

The research team will study how the harmless bacterium colonises cells at the back of the throat and whether it can either block the binding and invasion of N. meningitidis, or directly kill it. They have already discovered that it has molecular weapons that are often used to destroy neighbouring bacteria.

Finally, they will investigate whether it can be used to stimulate the immune system to destroy N. meningitidis.

Building on this work, the team’s main goal now is to evaluate how best to use these proteins to create a new, more effective vaccine.

Pneumococcal meningitis is caused by a bacterium called the pneumococcus.

There are over 90 different strains of pneumococcal bacteria and each has a different sugary coat called the capsule.

Read more about our current and previous research here.

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Trusts and Grants

a real difference to a person’s wellbeing.

One person to benefit from our art therapy support is Michael, as wife Angela explains.

Michael, from Derby, contracted pneumococcal meningitis and Hib, leaving him with an acquired brain injury, communication impairment, memory loss, fatigue and needing full-time care. He has undertaken a number of art therapy sessions, which have made a big difference to their family life.

Trusting in art Our fight against meningitis requires long-term investment. And with no Government funding, the support we receive from trusts and foundations is an essential part of the fundraising mix.

Sarah Ramsay, our Trusts and Grants Manager, highlights one successful collaboration.

“This has become a regular thing for Mike, giving him a sense of stability. He is always pleased with his achievements there. He gets to socialise and the therapeutic benefits of doing the artwork are emotional, mental and physical.

We’ve enjoyed a long-term relationship with the D’Oyly Carte Charitable Trust, who this year have contributed £4,000 to our creative therapies programme.

Dame Bridget D’Oyly Carte (1908-1985) established The D’Oyly Carte Charitable Trust in 1972 to support her personal interests which included her enjoyment of theatre, music and gardening, and, in particular, helping the disadvantaged and disabled. Today, the Trust continues her legacy through its grant programmes.

“The art really helps Mike – it’s helped us adapt to changes in health and lifestyle.

It’s extremely therapeutic for him and improves his wellbeing.

“And, as his carer I get three hours respite a week while he is there.”

Find out more about our art therapy and other ways we can help on our Support Services Fact sheet here.

Creative therapies such as art, music or play therapy can offer a person time to explore their thoughts and feelings away from the pressure of family. Working with paints, sand, figures, clay or music can help them express any worries and concerns and develop ways to manage emotions and relationships in a positive way.

We aim to work alongside professionals so that together we can help to make 9

Events Sign up for our Five Valleys Walk We’d love you to join us for our flagship Five Valleys Walk.

This sponsored walk through the stunning Cotswold countryside has something for everyone; whether you bring your friends, family or your work colleagues along, or even your four-legged friends.

The clever thing about the walk is that you can choose your distance – with the shortest stretch being a couple of miles and the longest the full 21 miles. You can also start and finish at any checkpoint.

Early Bird Tickets at discounted prices are available to purchase online now - adult £10; child £5 (under 5s free); and group £25 (up to four people)

Make a note of the date in your diary – it takes place on Sunday 24 September.

Images © Pete Wilson Rokermedia Images and Jon Bastin.

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NO WAY MARATHON SET FOR A LONG RUN An innovative fundraising idea is set to run and run.

"So, I’m giving them the opportunity to enter the No Way Marathon instead – all the benefits of entering a marathon but none of the hassle!”

The No Way Marathon 2017 is the brainchild of our London Marathon runner Katherine Bellenie and is for everyone who wouldn’t consider taking on the real running challenge.

Katherine’s alternative non-event gives those who sign up their own running number and medal and the opportunity to support our lifesaving and life-changing work.

Instead of pounding the streets of London for 26 miles on 23 April those who sign up to the No Way Marathon 2017 get to sit on the sofa for the full duration of their non-event.

Anyone can enter, there are no age restrictions and people can even register their pets. It costs £10 for adults and £5 for children or pets, or more if you want to.

“This is a great opportunity to take part in a marathon that never happens and raise money for Meningitis Now,” Katherine, from Horsham in West Sussex, said. “I am actually crazy enough to be running the London Marathon for Meningitis Now this year, but most of my friends would never consider doing it, and their reaction is ‘No Way’.

For more information and to register visit the website www.nowaymarathon.com or email info@nowaymarathon.com.

Support our London Marathon runners on Sunday 23 April.

BE A KILTWALK HERO Get your kilts on and be a kiltwalk hero. We have four kiltwalks coming up north of the border and with three walk lengths at each venue there’s bound to be a kiltwalk for everyone.

The first event is The Glasgow Kiltwalk on 30 April, followed by Aberdeen (4 June); Dundee (20 August) and finally Edinburgh (17 September).

Walk lengths vary from The Wee Wander at six miles to The Big Stroll (15 miles) and The Mighty Stride (23 miles). There’s more info here.

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Thank you to…

Amelia, for a dress down day at her school in St Andrews, in memory of little sister Claudia, raising a whopping £232.

And our dedicated young ambassador Fiona Yelland, for visiting their school assembly.

Sarah Maxwell and her family, for raising £530 by asking friends and family to donate in lieu of birthday gifts.

Dan Hopkinson, 40, of Matlock in Derbyshire, along with Curtis 'CJ' Swindell from Cromford (22), Josh 'Bungle' Eaton from Tansley (24), and Sean Pritty from Matlock (27), who are planning the ‘Big Scoot’ – a thirty mile ride on dirt scooters around the Peak District, all within nine hours!

Law graduate Charles Hannaford, 24, who is planning an epic solo 17,000 mile cycle ride around the world to raise money for us.

Donna Little, of Chesterholm, Carlisle, has been energetically fundraising following the recovery of her daughter Evie from the disease. She recently handed over £3,300 to our founder Steve Dayman.

Becky Doyle and family, for organising another glamorous Liam’s Smiles Charity Ball, raising over £5,000.

RECEIVE REGULAR NEWS UPDATES For up-to-date news from Meningitis Now, sign up to our monthly eNews here.

Lauren Gray, who organised collections and a Christmas raffle in Matalan, Paisley.

And to her managers for supporting her.

The amount raised comes to a grand total of £1,031.

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Dedicated young charity fundraiser Daisy Cummings, aged 5, of Attleborough, who ran the 1.5 kilometre Great Birmingham Run mini run. Daisy’s little sister Lucy recovered from meningitis.

Helen Barley of Beverley, East Yorkshire, who had her hair chopped off in support of our cause, after her friend’s little boy contracted meningitis when he was 17 months old. She raised £245. She told us.

“I've made a small sacrifice. I'm still getting used to short hair, but it'll grow.”

Singer songwriter Ange Hardy, who lost her teenage brother Steve to meningitis aged just 11, for performing at our Gloucester Cathedral Christmas Concert.

Kathleen Simpson, Mary and daughter Rachel Rutherford for completing the Edinburgh Winter Festival 5k, raising a whopping £711 for us. Rachel contracted meningitis as a baby, and it’s great to see her achievements

St Monan’s Community Choir, who Brian Craib teaches and where his wife Ruth helps out. They wanted to show their appreciation for the work Brian and Ruth do and presented them with a cheque for £150 for us.

Ashley Smith and her family for organising their annual Meninjammies competition and raffle, raising a whopping £460.

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