News magazine issue 9 summer 2017

Summer 2017 issue 9

The magazine for Meningitis Now supporters

London Marathon 2018 Liverpool research visit MARM for Universities Believe and Achieve Lytham Festival

Inside this issue 4

Latest news

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Lytham Festival

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MARM for Universities

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Research visit

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Volunteers

10 Events 12

Corporate news

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Believe and Achieve

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Thank you

On the front cover

Enjoying London Marathon.

For more on next year’s event and to sign up – see page 4 or here.

Meningitis Now Fern House, Bath Road, Stroud, Gloucestershire, GL5 3TJ Tel: 01453 768000 Email: info@meningitisnow.org Web: www.MeningitisNow.org www.fightfornow.org Registered Charity Number (England & Wales) 803016 (Scotland) SCO37790. Company Registration Number 2469130 © Meningitis Now 2017

Welcome to News I’m delighted to welcome you to this edition of News magazine, and would like to take this opportunity to introduce myself.

My name is Dr Tom Nutt, and I am excited to be the new Chief Executive at Meningitis Now. I have joined the charity from Healthwatch Essex, where I was CEO of an organisation that captures people’s lived experiences of health and care and uses this insight to help shape and improve local services.

Healthwatch Essex also provides a unique information service that helps people access, understand, and navigate the health and social care system – an invaluable resource when people often struggle to know where to turn for the care and support they need.

about the valuable work they do - whilst also finding time to enjoy a welcome picnic in the garden here at head office!

It is a real privilege to be given the opportunity to lead Meningitis Now, a charity dedicated to beating meningitis here in the UK. Our task ahead won’t always be easy, but I am confident that we can work towards a brighter future, by continuing our focus on meningitis prevention and supporting those people whose lives have been touched by meningitis.

I hope you enjoy this edition of News and reading about the wonderful fundraising efforts of our supporters and the latest on our research, awareness and support activity.

Prior to this, I worked in local government, covering health strategy and policy, the voluntary sector and finance and change management, and before that I was a historian at the University of Cambridge, working on the history of the family.

I look forward to meeting some of our truly inspirational supporters, and would like to extend the thanks of everyone at Meningitis Now for your amazing, ongoing support.

I am really pleased to join the team at Meningitis Now, and hope my experience will benefit the organisation and enable us to continue and build on the success the charity has seen over the past thirty years.

Dr Tom Nutt, Chief Executive Meningitis Now

In my first few weeks I have been spending time getting to know the team and finding out

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Latest news London Marathon In April, 93 runners took on the London marathon and raised an incredible total of £195,856.40 for Meningitis Now! If you’re looking for a challenge or a way to raise money for us, why not apply for next year’s London Marathon?

Applications are open now www.meningitisnow.org/londonmarathon/

Congratulations to our supporter Frank Synek, who has completed his epic trek from Land’s End to John O’Groats.

Those of you who have been following Frank’s progress may not be surprised to hear he even ran the last 18 miles from Wick, having already walked 25 miles that day! The 1,000 mile walk took the 30-year-old from Devon 33 days in total. What an amazing journey it has been for him. So far he has raised a total of £2,895 for our ongoing work (£3,439 with gift aid) with hopefully still a few more donations to come.

Kay and Archie Craig hosted a ‘Time 4 Tea’ event recently, not only raising awareness and funds but also organising an event that brings people together. They have been holding their annual event for many years, and rather than just expecting people to dig deep into their pockets, they give them a lovely, chilled afternoon with friends, endless cups of tea, coffee and cake - with some terrific raffle prizes too. They raised over £700, and we very much appreciate all their efforts and hard work.

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Brian & Ruth Craib hosted a concert in Fife, raising money for Meningitis Now. Brian, conductor of St Monans Community Choir, was struck down by meningitis in 2016. Fortunately, with excellent care and his own determination, he has made a remarkable recovery and is back conducting the choir again. The concert was a huge success, with volunteer Michaela Harmes attending on the night to share her story and help raise awareness.

It was all very fitting as Brian had taught Michaela music many years ago! The concert raised a whopping £1,200.

Steve steps to success Our founder Steve Dayman completed his 34th and final long distance walk to fight meningitis in June – and it ended on a high note.

The 201-mile walk over nine days around the Northern Ireland coast from Londonderry to Rostrevor raised £30,000, smashing Steve’s £25,000 target. “This walk may have been my last long-distance walk but I will continue to visit Northern Ireland on a regular basis to meet families affected by meningitis, raise awareness and attend events organised by our supporters,” he said.

Chloe Peters and her friends took part in a 5k Mud Run recently in memory of their friend who passed away from meningitis last year. They laughed the whole way around the course even though it was really hard at times. Poor Chloe ended up with a sprained ankle and had to rest it for a week, but she’s still in good spirits after thoroughly enjoying the experience. Chloe is even looking into volunteering for us as she would love to get more involved in events in her local area.

“I would like to hear from families in Northern Ireland who have experienced meningitis and could help us continue our journey.”

Email Steve on steved@meningitisnow.org 5

Edward Dee Forever Fund chosen as festival partner Our founder Steve Dayman was in Lytham to raise awareness and thank local supporters, who have raised over £30,000 for the Edward Dee Forever Fund.

He was joined for the day by Elizabeth Dee, who has supported us since losing her 10-year-old son Edward in December last year. Elizabeth and her family set up the Edward Dee Forever Fund, which has been chosen as one of the charity partners for this summer’s Lytham Festival - the north-west’s biggest live music festival.

“Edward was such a big part of the local community,” Elizabeth said. “He knew so many people and did so many things.

“He was a funny, witty, friendly and popular boy; a larger than life boy who lived life to the full and inspired both children and adults.

“Edward has left a huge void in our lives which can never be filled. We miss him more than words can say.

We, and the community we live in are devastated by his loss and are determined to make something positive come out of Edward’s death.”

The local community has taken part in a huge range of activities to raise awareness of meningitis and to raise funds.

Edward’s school, Clifton Primary, held the Edward Dee Clifton Triathlon in his memory and Steve and Elizabeth attended the running stage on Friday 30 June, followed by a balloon release.

The Edward Dee Forever Fund and Meningitis Now will be the charity partner for the West End Proms, which feature as the festival’s climax concert on Sunday 6 August.

Any volunteers?

Steve also used the visit to call for local volunteers to help at the festival.

Volunteers can get involved in a range of activities, from handing out disease signs and symptoms cards to raise awareness, collecting vital donations or being a steward to help direct people and keep the site tidy and litter free. Anyone interested can contact Roya Armstrong, our north-west fundraising officer on royaa@meningitisnow.org for further information.

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MARM for universities goes live

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Every university in the UK could experience at least one case of meningitis or meningococcal disease (meningitis and septicaemia), particularly amongst first year students.

During the winter term of 2015/16 there were several high profile deaths amongst first year students – each a tragedy for the individual, their family and friends and the university.

Based on recommendations from Public Health England’s ‘guidance on the prevention and management of meningococcal meningitis and septicaemia for higher educational institutions’, this recognition mark is a great way for universities to let their students know they care.

We have worked with a number of universities and public health professionals around the UK to develop this important and timely recognition mark.

To raise awareness of the ongoing threat meningitis and meningococcal disease pose to first year university students and promote vaccine uptake, we have developed the UK’s first Meningitis Aware Recognition Mark (MARM).

“We are delighted to have worked with Meningitis Now on the development of this new Recognition Mark, with the hope of ‘raising the bar’ nationally for meningitis awareness and prevention. It is vital for the health of the next generation that universities prioritise a coordinated and effective approach to tackling this potentially fatal disease”.

Dr Dominique Thompson Director of Service, University of Bristol Students’ Health Service

Universities have a vital role to play in raising awareness of disease, promoting vaccination and being ready with a plan if a case occurs.

We are now inviting all UK based universities to register online at

www.meningitisnow.org/marmuniversities to access a toolkit of resources to help them apply for our meningitis aware recognition mark (MARM).

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The development of the Meningitis Aware Recognition Mark (MARM) for Universities was supported by donations from a Life for a Cure and the James Tudor Foundation.

Liverpool research visit Jane Blewitt, our Research and Information Adviser, led a very successful visit to Liverpool University, to see first-hand how our pneumococcal vaccine project is progressing. The ultimate aim of this study is to develop a vaccine that gives better protection against pneumococcal disease.

The team met with Professor Aras Kadioglu and Dr Marie Yang who are leading this research. The group learnt how research into prevention can make a real difference and had the opportunity to ask the researchers questions. The supporters who came with us found the visit really interesting and we were able to have a thought provoking discussion about meningitis research in general and the many questions that still remain unanswered.

Three bereaved families also attended, along with two representatives from our corporate partners, Leigh Day.

More information about this project can be found on our website.

Volunteers to those in a similar situation - and their friends and family.”

Online Forum Judith Selby has been volunteering for Meningitis Now since 2012, and regularly contributes to Health Unlocked – an online forum for people affected by meningitis.

Judith is motivated by her own experience.

She said: “I had pneumococcal meningitis in 2007 and, having made a good recovery, I felt I could provide support 8

“I get between 5-8 emails a week. If I feel I can help I write a reply. We never give health advice - I refer those questions to Meningitis Now’s helpline.”

Judith finds the role very rewarding, adding: “If I can support someone who has been affected as I was, then I feel satisfied. It means something positive coming out of a bad experience.”

A huge thank you to Judith for the support she gives.

Support for Surrey After three cases of meningitis were confirmed at Surrey University, Public Health England decided to vaccinate 4,200 students as a precautionary measure. Meningitis Now attended the vaccination sessions with staff and volunteers talking to students and handing out signs and symptoms cards.

We would like to say a big ‘thank you’ to Julie Hughes, Bonnie Grover, Edmond Flack, Vanessa Whiting, Robin Luff and Gill Noble, who attended both rounds of vaccinations totalling 100 volunteer hours! Through kindly giving up their time, our volunteers have contributed to the protection of 3,528 students against Meningitis B.

Glasgow Volunteers Staff met with some of our very smiley volunteers in Glasgow for a catch up. It was wonderful to hear of all the fantastic fundraising and awareness raising efforts of the team and their plans for the future!

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Events Five Valleys Walk 30th Anniversary This September sees the return of the popular Five Valleys Walk through the beautiful Cotswold countryside, marking the 30th anniversary of the much-loved event.

The sponsored walk through Stroud’s five valleys; Painswick, Slad, Toadsmoor, Chalford and Nailsworth, is taking place on Sunday 24 September, and as in previous years, participants can complete part of the walk or take on the whole 21 mile circuit.

Checkpoints open at 8.30am and close at 5.30pm. There will be a free shuttle bus service available for when you’re ready to call it a day, and be taken back to your starting point.

So, what are you waiting for?

Sign up now >>

A FREE pint is kindly being provided by Stroud Brewery, for all participants who complete the full 21 mile circuit and collect all eight stickers, one from each checkpoint.

This year, those getting involved can really look the part and stand out by purchasing a range of products from our new online merchandise shop!

You can get your hands on t-shirts, hoodies, backpacks, water bottles, and even dog bandanas for your four-legged friends.

As in previous years there is a raffle on the day and a prize for the top fundraiser.

Images © Pete Wilson Rokermedia Images, Jon Bastin and Jemma Phillips

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Events for 2018 LAKE DISTRICT 8 PEAK CHALLENGE 3 – 6 MAY 2018

RIDELONDON-SURREY 100 29 JULY 2018

Stride out on a Lake District adventure

We’re looking for cyclists to join our team for a guaranteed place in next year’s RideLondon-Surrey 100.

Offering spectacular views wrapped up in a serious adventure, Meningitis Now’s Lake District 8 Peak Challenge promises you a weekend you’ll never forget.

The Prudential RideLondon-Surrey100 takes place on Sunday 29 July (subject to final confirmation), starting in the Queen Elizabeth Olympic Park, and following a 100-mile route on closed roads through London and into Surrey’s stunning countryside.

Split over two walking days, the challenge will see you take on eight peaks in the Lake District, all above 3,000 feet including the tallest mountain in England, Scafell Pike. Whether you take part individually or in a group, the Lake District 8 Peak Challenge is a perfect opportunity to enjoy breath-taking scenery while testing your stamina, both mentally and physically.

Rachel Oakley, event organiser said: “RideLondon-Surrey has all the atmosphere and excitement of the London Marathon, but on two-wheels.

“With a combination of traffic-free roads, winding country lanes, leg-testing climbs and the phenomenal support of spectators, it provides an unforgettable experience.”

Register your interest for more information, or sign up today for just £49 (usually £75). We ask that you pledge to raise a minimum of £500.

For more information call Rachel on 01453 769024 or email: rachelo@ meningitisnow.org

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Corporate news The South Gloucestershire Show is a packed and entertaining two-day festival for all the family, taking place on 5 and 6 August at the Windmill Fisheries Showground in South Gloucestershire. Find out more here.

QVC deliver on workplace support Kevin Ryan nominated us, and the organisation chose Meningitis Now as their charity of the year. Our regional fundraiser

We’re delighted and excited to have been chosen as the nominated charity for this year’s South Gloucestershire Show - for the second year running!

Sarah Williams, of the Show’s organising committee, told us: “After the great fun we had in 2016 working with Meningitis Now we couldn’t not support them once again this year.”

Last year’s show saw nearly £5,000 donated towards our lifesaving and life-changing work. It also provided a great opportunity to raise awareness of meningitis to the show’s visitors, and make sure they knew the signs and symptoms and how to look out for themselves and their loved ones.

Roya, and support officer Chris, went along to collect a giant cheque for over £17,000 from Kevin and Rob Muller, CEO of QVC in the UK. Read more here.

Brighter Future Partners A big thank you to our Brighter Futures Partners; Caroline Gardner, GWR, Foot Anstey, Irwin Mitchell, Leigh Day, Pfizer, eZe Energy and Boyes Turner, who are working with us to make a real difference.

Harry Gardner, our Corporate Fundraiser, said: “We’re really excited to have been selected as the nominated charity and are looking forward to an enjoyable and rewarding weekend. I’d like to invite any of our local volunteers who would like to join us to help make the most of this wonderful opportunity, to get in touch – the more the better!” Email Harry.

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Funding helps us Believe and Achieve We’re set to extend our life-changing work with young people, thanks to funding from the National Lottery.

We’ll receive nearly half a million pounds of UK National Lottery money through the Big Lottery Fund for good causes over the next five years.

Get together: Building a united, supportive community of young people affected by meningitis – through online blogs and social media opportunities to meet each other and the Young Ambassador programme.

It will be used to fund a combination of our existing work across the country with young people aged 14 to 25 and build capacity to develop that support.

The project will be known as ‘Believe and Achieve’ in tribute to Alex Williams, our founding Young Ambassador who sadly died in 2012. ‘Believe and Achieve’ was his motto in life and became the motto for the Young Ambassador Programme.

Alex remains an inspiration to the charity’s Young Ambassadors who knew him and who will be involved in this project.

Believe and Achieve will offer different types of support to help young people to rebuild their lives after meningitis. It will focus on three key areas:

Beth Bottrill, our Fundraising Director, said: “We’re thrilled to have been successful with this application and look forward to working closely with the Big Lottery Fund to improve our work with young people.”

Young Ambassador Rosie Heaton said: “The money received from the Big Lottery will ensure no young people will have to go through meningitis alone. I’m really excited to see what opportunities this will bring, and the help it will provide to families with similar experiences to my own.”

We are looking forward to telling you more about how young people can get involved as the project develops over the coming months.

Get ready: Workshops, mentoring and coaching to help young people progress into education, employment and achieve their goals.

Get stronger: Counselling and opportunities to regularly talk to other young people with similar experiences to help address the less visible after-effects of meningitis, such as feeling isolated, low self-esteem, anxiety and depression.

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Thank you to…

Jackson Boyd Lawyers and staff for raising a fantastic £1,450. Amanda Harris, Community fundraiser for Scotland said: “It’s simply Amazing! We really cannot thank you enough for all that you have done to raise this amount”.

Our neighbours at the Stroud branch of B&Q who dressed up as superheroes to collect donations from generous customers, whilst contributing to protecting the public (an obligation of any good superhero!), by handing out meningitis signs and symptoms cards. In total, they raised over £120.

Three brave supporters who took to the sky on Saturday 17th June and jumped out of a plane at more than 10,000 feet! Michaela Harmes, Nicolle Peat and Kerin Marshall have collectively raised £2,111. A massive thank you to these inspirational girls for taking on this challenge, we are very proud of you!

Rachael Dobson, who raised over £1,600 in memory of her good friend ‘Gaz’ Rowlands, who died from meningitis aged 16. Over the last year Rachael has taken on 16 different challenges, including; a Zipline, an abseil, bungee jump and a skydive!

Ruby Burrell’s family and friends who raised an amazing £11,000 by holding a charity Golf day. Over the last seven years, Ruby’s family and friends have been tirelessly fundraising in her memory and have raised over £95,000! A big thank you goes out to everyone involved for your amazing fundraising efforts.

Liz Townley for helping at Head Office for the last few weeks, creating a list of university contacts for our student campaign.

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Everyone who volunteered for GWR’s May Mayhem event. A real mix of people helped out by getting on board the ‘Tangerine Train’ and collecting donations. So far the total raised is £2,400!

Alex Underwood and her partner Ed who raised over £600 by completing a ‘Tough Mudder’ obstacle course. Alex said: “For anyone suffering, battling or learning to survive after meningitis; the mud, the ice, the water, the electric shocks, the bumps, bruises, cuts and subsequent aching joints - it was all for you!”

James Duff who organised a charity evening enjoyed by over 90 guests. The evening was held in the centre of Glasgow overlooking the River Clyde. The event was a great opportunity to raise our profile within the Glasgow area, and James is already making plans for future events saying, “next year I’m going bigger and better”! The event raised over £2,000!

Residents at the Smithy Court Sheltered Housing scheme in Little Sutton, Ellesmere Port for raising a fantastic £1,164.39! Residents held a series of fundraising events, which included a four-mile charity walk around the town by Joyce Boaden, whose son had suffered from the potentially fatal illness.

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