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The Brain Tumour Charity shining a light on

The GREY MATTERS

Issue 3 Spring/Summer 2013

Record ÂŁ1.5million investment in research More services supporting you every step of the way Top fundraising tips for summer Saving lives through research, information, awareness & policy

thebraintumourcharity.org


In this issue The Research news...................................................4 The Supporter Groups...........................................10 Brain Tumour Awareness Month roundup......14 The Support and Information news...................18 The Corporate Support.........................................24 The HeadSmart news............................................26 The Fundraising news............................................28

A little about us The Brain Tumour Charity is the UK’s largest dedicated brain tumour charity. We fund scientific and clinical research into brain tumours and offer support and information to those affected, whilst raising awareness and influencing policy. Our aim is to improve the understanding, diagnosis and treatment of brain tumours. Since we were established in 1996 we have invested over £10million in world-class research. Meet the team at thebraintumourcharity.org/theteam

Don’t miss... New research projects funded by The Brain Tumour Charity.....................4 An interview with Professor Denise Sheer..........................6 Summer fundraising top 10 ideas.....16 More Support and Information services............................19 Find a support group near you..........21 The Story of Hope: Tim Frost............22 New corporate partnerships.............24 HeadSmart has been busy..................26 2

Over 8,500 people are diagnosed every year with a primary brain tumour. We remember all those who have lost lives to a brain tumour and those who have lost family and friends.

Pictured above: The recently merged staff team at The Charity. Pictured on the front cover: Prof. Denise Sheer and her team of researchers at Queen Mary, University of London showing their support for Bandanas for Brain Tumours. The Grey Matters. Issue 3


A warm hello from our Chair CEO You will see on the following pages that the merger we announced in our last newsletter, bringing together The Brain Tumour Charity and Brain Tumour UK, is already making a real difference.

Welcome to The Grey Matters. We are delighted to bring you news in this edition of our record £1.5million investment in ten new worldclass research projects across several tumour types – see pages 4 and 5 for details.

Turn to page 20 to find out about our expanded range of nationwide support groups and our Development Co-ordinators who are dedicated to supporting those affected by a brain tumour wherever they live.

Research is at the heart of this charity and our merger is allowing us to do more than ever to find better diagnosis techniques and new treatments for brain tumours.

We also held several events for Brain Tumour Awareness Month with our first Bandanas for Brain Tumours Day a resounding success – visit our YouTube channel to see my appearance on BBC Midlands on 1 March. Widespread public awareness of brain tumours is fundamental and we will make certain our voice is heard.

Of course, we would be able to achieve nothing without our fundraisers and have used pages 28 to 31 to pay tribute to just a few. You can also read about an incredible day at the London Marathon in April where we cheered on a team of 60 who raised over £150,000 for research.

Thank you for your continued support.

Thank you to all who run, jump, bake, collect and donate so we can lead the fight against brain tumours. You are truly inspirational.

Andy Foote

Sarah Lindsell

The Brain Tumour Charity has been formed by the merger of two charities - The Brain Tumour Charity (formerly Samantha Dickson Brain Tumour Trust) and Brain Tumour UK.

Stay in touch Sign up for our monthly e-newsletter and help us save on postage. Read the latest issues and sign up at thebraintumourcharity.org/ enews The Grey Matters. Issue 3

Join in on Facebook at facebook.com/ thebraintumourcharity

Visit our website thebraintumourcharity.org

Follow us on Twitter @BrainTumourOrg 3


The Research news

Adult Children

New projects funded by The Brain Tumour Charity “In March we announced that we are committing a record £1.5million to ten new research projects. This is the biggest investment of its kind ever seen from a brain tumour charity in the UK and we are proud that all our grants go through a competitive process of independent peer review. The new awards support institutions throughout the UK and cover both adult and childhood brain tumours. They also build on work we have funded in the past, showing the difference we have made to the brain tumour research landscape in the last 16 years.” Neil Dickson, Vice-Chair of The Brain Tumour Charity and Chair of our Research Sub-Committee Summaries of the projects we will be funding are below (two awards, which focus on adults, are still being finalised). Read more at thebraintumourcharity.org/newresearch

Shutting down the energy engine for brain tumours Dr Daniel Tennant, University of Birmingham The work we are funding at the University of Birmingham will look at how mitochondria, the compartments which generate energy in all animal cells, function differently in glioma brain tumour cells compared with healthy tissue. It is hoped that, in the future, changing the way the mitochondria work in the cancer cells may improve the response of brain tumours to therapy.

DAXX – a new target for brain tumour drugs? Dr David Michod, University College London Dr Michod is investigating glioblastoma brain tumours in children. His project will work to understand the role of a protein called DAXX in activating genes which enable brain tumour cells to grow uncontrollably. The ultimate aim is to pave the way for a drug that could block the effect of DAXX.

Medulloblastoma – new drug targets? Professor Steve Clifford, Newcastle University Medulloblastoma is the most common malignant brain tumour in children. Professor Steve Clifford and his team are concentrating on a form of medulloblastoma called Group 3, which is the most aggressive tumour type with the worst survival prognosis. The project aims to screen Group 3 tumour samples to find biochemical activities that could be targets for new drugs. 4

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New imaging techniques to map gene activity Dr Colin Watts, University of Cambridge Dr Watts’ group plan to use fluorescent dyes to light up different parts of glioblastoma tumours in adults during surgery so that tissue samples can be taken from each region. Gene activity within the tissue samples will then be analysed and compared to the patient’s response to treatment. The work has the potential to make a significant impact on the way clinical decisions are taken.

Seeking patterns in low grade gliomas Professor Denise Sheer, Queen Mary, University of London We are funding Professor Denise Sheer and her team to look for distinct patterns of molecules called microRNAs in childhood low grade gliomas. It is hoped that the work will help us design drugs that target the tumour rather than surrounding healthy tissue. The researchers will be testing a large range of samples from St Jude Children’s Hospital in the USA.

Unlocking the origins of low grade gliomas Professor Sebastian Brandner, University College London Between 70 and 85 percent of astrocytoma and oligodendroglioma in adult brain tumours contain a mutated enzyme called IDH1. Professor Brandner’s project aims to use an innovative new model system to test an idea that IDH1 plays a key role in tumour development. The work could help identify the genetic mutations we need to target with new treatments.

Uncovering the role of fusion genes Professor Peter Collins, University of Cambridge Two genes, called KIAA1549 and BRAF, are fused together in over 60 percent of the cells that make up pilocytic astrocytoma brain tumours. Professor Collins and his team plan to use brain stem cells to explore the potential role of the fused gene in transforming healthy cells into cancerous ones. If successful, the project could help diagnose and treat pilocytic astrocytomas in future.

‘Fingerprinting’ paediatric glioneuronal brain tumours Dr Thomas Jacques, University College London Glioneuronal brain tumours are associated with the central nervous system. They often arise in children where there are other brain development problems. Using techniques they have honed to study epilepsy, Dr Jacques and his group at UCL are aiming to categorise glioneuronal tumours into different types. Patients may then be able to receive more tailored treatments. The Grey Matters. Issue 3

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An interview with... Professor Denise Sheer

Researcher at Queen Mary, University of London Professor Denise Sheer is a researcher at Queen Mary, University of London. She works with her team near Whitechapel in a dedicated building which houses a collection of state of the art research facilities and aims to provide a world-class biomedical research environment. Turn to page 5 to find out about her new project, seeking patterns in low grade gliomas, which is being funded by The Brain Tumour Charity. You can also watch an extended video interview with her at http://bit.ly/ZgtDxZ Why is research funding important? The funding to the research community is absolutely essential. We need to understand what causes brain tumours to grow, to develop in the first instance, and then what causes them to respond to one treatment or another. We need to provide this essential link between basic science and clinicians.

Call for Programme Grant outline applications Last Christmas you supported our Be a Star appeal to fund a new research Centre of Excellence in 2013. We have now asked leading scientists and clinicians to submit outline applications for our Programme Grants and expect to announce the creation of two further dedicated research units by the end of the year. Thank you for helping us fund cutting-edge research. Find out more at thebraintumourcharity.org/ programmegrant or read an update from our first Centre of Excellence, the Samantha Dickson Brain Cancer Unit, on the next page.

Why should people support The Brain Tumour Charity? The way The Brain Tumour Charity funds research is a great example of best practice. The projects are scrutinised thoroughly by independent peer reviewers, which leads to a period of interaction where they suggest ways that the project might be improved. This ultimately ensures that the projects are the best they can possibly be. Secondly, they support innovative research, and this is exactly what the field needs. Supporter Groups and those affected by brain tumours who want to do something can rest assured that The Charity is doing a fabulous job of advancing brain tumour research. What do you hope your new research project will achieve? I hope that we will be able to make discoveries that will allow new forms of treatment to be derived. Understanding the molecular basis of these different low grade gliomas will hopefully lead to us discovering a new type of sub-classification. 6

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UCL update The Samantha Dickson Brain Cancer Unit, our research Centre of Excellence at the prestigious UCL Cancer Institute, is dedicated to bringing us closer to a cure for brain tumours. It started work in 2009 with a ÂŁ1.6million grant from The Brain Tumour Charity and has made real progress. Read more at thebraintumourcharity.org/ uclachievements

We occasionally run tours of the Samantha Dickson Brain Cancer Unit to show supporters exactly how their money is being spent. If you are interested in attending, visit thebraintumourcharity. org/labtour

Stem cell reprogramming research breakthrough In March, the results of glioblastoma research conducted at the Samantha Dickson Brain Cancer Unit were published in the prestigious Genes & Development journal. Dr Steve Pollard led the project for our Centre of Excellence, working in collaboration with other units in the UK and Europe. The research team investigated how the activation of certain genes can cause cells to grow uncontrollably and form a tumour in adults. Using experimental stem cell reprogramming techniques, the researchers were able to change the status of genes and, in turn, slow down tumour growth. In addition, the work identified a gene called TES which may have a role in preventing glioblastoma cells from spreading to the surrounding brain. The tendency of cancer cells to invade healthy tissue is a particular problem with glioblastoma and makes the tumours very difficult to remove surgically. We are proud of the latest ground-breaking work from our Centre of Excellence, which will help prioritise the testing of new drugs. Read more: thebraintumourcharity.org/stemcellbreakthrough

Creating a research legacy The Samantha Dickson Brain Cancer Unit is creating a new generation of brain tumour researchers. We reported in the last edition of The Grey Matters that Dr David Michod, who was a postdoctoral scientist under our Programme Lead Professor Paolo Salomoni, had become a lecturer at the Institute of Child Health. He has now received a project grant from us to work on childhood glioblastoma as part of our record ÂŁ1.5million investment in research. Read more on page 4.

Having been inspired when he was at secondary school to become a researcher, Dr David Michod would like to invite a young person to visit his laboratory once a year to see brain tumour research in action. Email research@thebraintumourcharity.org to register your interest. The Grey Matters. Issue 3

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Brain tumours: impact, management and what the future holds for patients A lecture by Dr Colin Watts On Thursday 21 March, as part of Brain Tumour Awareness Month, we held our inaugural lecture on research into brain tumours at Queen Mary, University of London. The lecture was given by Dr Colin Watts, a leading UK neurosurgeon funded by The Brain Tumour Charity. Dr Watts described the care pathway for brain tumour patients and explained how genetic markers could be used to help doctors understand the behaviour of certain tumour types and determine the most appropriate treatments. He also spoke about his GALA-5 clinical trial based at Addenbrooke’s Hospital in Cambridge, which is funded by The Brain Tumour Charity and Cancer Research UK. The trial uses a fluorescent dye, which patients take as a ‘pink drink’ before surgery. This makes the tumour cells light up under UV light in the operating room, which helps surgeons to remove more of the tumour while saving healthy brain cells. You can watch a video of Dr Colin Watts’ lecture via thebraintumourcharity.org/wattslecture. We are grateful to Pure Motion Productions who filmed the lecture free of charge. If you would like to find out more about the GALA-5 clinical trial, visit thebraintumourcharity.org/gala5

An evening with The Brain Tumour Charity President Our President, Professor Colin Blakemore, also gave a lecture during Brain Tumour Awareness Month. The talk took place at The University of Nottingham on Saturday 16 March as part of their Brain Matters Day. Read more on page 26.

Run for Research Want to support our vital research into brain tumours? Join The Brainy Bunch and get involved in one of our many runs! Get in touch with our fundraising team on 01252 749043 or visit thebraintumourcharity.org/runs 8

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Our research network We fund world-class research into brain tumours at institutions across the UK and have invested over £10million to date. Our current research covers both paediatric and adult, as well as high and low grade tumours. In addition to supporting crucial work in the laboratory, we also fund clinical trials to provide a unique breadth of research from bench to bedside. In total, our grants currently fund: •

8 clinical trials

1 Centre of Excellence at UCL

25 research projects

We are proud to be supporting two new research projects led by Professor Richard Grundy at The University of Nottingham. The projects were made possible thanks to money donated in memory of two girls who tragically died from a brain tumour.

Unravelling the role of the protein H3.3 in paediatric DIPG

Uncovering genetic ‘signatures’ for childhood ependymomas

Granted earlier this year, Professor Grundy’s new project is investigating childhood diffuse intrinsic pontine glioma (DIPG) brain tumours. It is examining the role of a protein called H3.3 in tumour development with the eventual aim of developing new drugs. The project is funded in memory of five year old Billie who lost her battle with a DIPG brain tumour last year.

In April we announced a new research project into childhood ependymoma brain tumours. Originally granted in November 2012, the project is funded with money donated in memory of Luna who lost her life to an ependymoma. It aims to identify biomarkers which could lead to more personalised treatment options and is part of a wider clinical trial funded by Cancer Research UK.

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The Supporter Groups With over 110 Supporter Groups across the UK, their fundraising is critical to our work. All of us at The Charity are honoured to work with some truly inspirational and dedicated people. The funds they raise support our world-class, peer reviewed and accredited research programme and help to raise awareness of brain tumours. Setting up a Supporter Group with us is the best way forward for people who want to raise funds for someone living with a brain tumour or in memory of a loved one because: •

• •

You can raise funds in the name of your loved one or create a group that raises money in tribute to several people, for example The Brains Unite Fund. We handle all the administration, Gift Aid and Charity Commission paperwork: you simply arrange your fundraising event, send the donations to us and we do the rest. We provide a comprehensive support system to help you raise the most money in tribute to your loved one and will provide you with updates on what your Fund is helping to achieve. You fundraise under our charity number but can grow independently, fundraising at a pace that suits you whilst establishing your group in your local community. You may choose an area of our work that you wish your funds to be invested in. Every penny our groups raise is invested in our charitable work. We do not use them for admin or general overheads.

Welcome to our new groups Whilst often set up in the most difficult circumstances, we are truly grateful to our groups who have chosen to work with us following the diagnosis or loss of a loved one. We welcome the following groups: The Leanne Marie Thorp Fund The Robert O’Dowd Fund The Christian Simpson Fund The Heads Up Fund The Sophie’s Smile Fund The Barbara Wood Fund The Simon Seivewright Fund The Andrew Sherwood Fund The Jon Fredrickson Fund The Keith Collins Fund The Patricia Bushnell Fund The Beating Brain Tumours Fund The Niamh-Ella Power Fund The Miranda Worgan Fund The Simon Huxtable Fund If you want to visit their webpage, the format is thebraintumourcharity.org/ FirstnameSurname

See all our Supporter Groups: thebraintumourcharity.org/thesupportergroups Ben, pictured on the right, is 14 and living with a brain tumour. His mum, Sharon, set up The Ben Sambrook Fund over five years ago and has raised over £100,000 to date. 10

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The Supporter Group events Globetrotting for brain tumours At the start of the year, Carol Williams set out to raise awareness on a truly global scale by wearing a branded The Brain Tumour Charity t-shirt with pride on her cruise around the world. She wrote a blog to document the journey and her t-shirt became such a star on board that it collected its own sponsorship! Carol is spreading the word in support of her friend Julie Fisher, who is living with a brain tumour and recently created The Heads Up Supporter Group. Julie dedicated 2012 to supporting The Brain Tumour Charity and has raised thousands of pounds with the help of family and friends.

At the time of writing Carol and her t-shirt had just returned from their trip, having visited several countries together including India, Australia, the United Arab Emirates and Israel. You can read about their adventures, and take a look at some fantastic photos, by visiting Carol’s blog: http://bit.ly/11wnj1X

Big night for brain tumours In January, The Tonk Clarkson Fund held their first big fundraising event at The Qube at the Burntwood Court Hotel in Barnsley. Guests enjoyed first-class entertainment from dance acts and a live band while competing for prizes in the raffle and auction. Despite the snow, the event was a huge success and raised £4,087 in memory of Tonk Clarkson.

“It was an amazing night; everyone really enjoyed it and the room was packed out with supporters! We are hoping to make this an annual event as everyone has been great with their support and donations.” Kerry, Tonk’s wife

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...The Supporter Group events...

The Ian Widdup Fund

Angela Widdup sold Christmas cards and other homemade treats at her local Christmas fair and raised £131 for The Ian Widdup Fund.

The Lyndsey Roughton Fund got the local fish and chip shop, friends, family and companies involved in Bandanas for Brain Tumours Day.

The Lyndsey Roughton Fund

There’s more... The Andreas Papadopoulos Fund organised a music event at the Jericho Tavern in Oxford and raised £850. Jeannette Bolt held a coffee morning to raise money for The Alex Bolt Fund and raised £1,200.

The Leanne p Gill Parry of The Dave Parry Fund in Marie Thor Fund Oxfordshire organised a barn dance Supporters of The Leanne Marie and raised £2,711. Thorp Fund have been busy taking part in The Lucinda Davis Fund held their annual sponsored swims, our Bandanas for Brain Strawberry Ball and raised £3,162. Tumours Day and a fancy dress beer walk! They have raised £1,080. St Neots School held a sponsored walk for The Antony Wills Fund and raised £237.

Thank you

The Andrew Stringer Fund invited friends and family to take part in their pudding evening and raised £613.

The Andrew Stringer Fund

If you’ve got an event coming up please don’t forget to tell us about it and send us your pictures! 12

We are lucky to be represented by Supporter Groups at running events all over the country. Runners include Helen Norman and friends who tackled the Reading Half Marathon for The Brains Unite Fund, Christine Chessman who ran The Brighton Half Marathon for The Niamh Silk Fund and Dave Kelley who ran the Fleet Half Marathon for The Isobel Kelley Fund. We also had eight runners take on the London Marathon, representing six Supporter Groups. Read more about the London Marathon on page 28. The Grey Matters. Issue 3


Double win for Danielle McGriskin

The Danielle McGriskin Fund

We were thrilled when we heard that Danielle McGriskin, who runs The Danielle McGriskin Fund, had won the Diana Courageous Citizen Award and The Belfast Telegraph Spirit of Youth award for her amazing fundraising achievements. Sixteen year old Danielle, who is living with a brain tumour, has undertaken numerous fundraising events since setting up her Supporter Group in 2012 and has already raised over £20,000 for The Brain Tumour Charity and for other charities in Northern Ireland.

Congratulations Danielle a well-deserved achievement! The Raj Rana Fund recently featured in the BBC Brain Doctors documentary. Set up last year, The Fund has already raised over £10,000 through a variety of events. Watch a clip of the documentary: http://bbc.in/13Rxb9L

The Raj Rana Fund

Upcoming events... 18 May: Coffee Morning The David Philip Crooks Fund 21 May: Golf Day, Lambourne Golf Club, The Kevin Ackling Fund 8 June: Summer Gala The Michelle King Fund 8 June: Nightrider The Alec Normand Fund (pictured right). Including Clare (Alec’s mum) and James from The Brain Tumour Charity staff team.

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29 June: Golf Day and Gala Dinner The Alfie Say Fund 13 July: Charity Ball The Sarah Kitchener Perrow Fund

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BRAIN TUMOUR AWARENESS MONTH

In March you spread the word about brain tumours all over the country and raised thousands of pounds.

Tea parties We were delighted to despatch over 100 tea party packs for Brain Tumour Awareness Month. The packs, which include a comprehensive guide, bunting, balloons, posters and invitations, make it even easier for you to raise money at your tea party and help make sure that everyone in your community knows about brain tumours. Thank you to everyone who organised an event in March and to those who ate, drank and donated! Remember you can hold a tea party all year round: thebraintumourcharity.org/teaparties Credit: completephotography.co.uk

The Joseph Foote Ball On Saturday 2 March the annual Joseph Foote Ball helped kick off Brain Tumour Awareness Month, raising over £120,000.

Credit: completephotography.co.uk

Held at the Hilton Metropole Hotel in Birmingham, over 800 guests came to the Ball, which featured a champagne reception, a three course dinner and entertainment from Dionne Bromfield and X Factor star Jahmene Douglas. Guests took part in a raffle, auctions and games to win some amazing prizes. The event is held in memory of one of our inspirations, our Chair Andy’s son, Joseph, who lost his life to a brain tumour. On the night, over 100 guests pledged to raise £1,000 each this year for The Brain Tumour Charity. Keep checking our website and social media profiles for details of next year’s Ball.

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Bandanas for Brain Tumours

Check o ut more photos on our F acebook page! http://on .fb.me/1 1ujCuW

Our first ever Bandanas for Brain Tumours Day, held in partnership with Hammer Out Brain Tumours on Friday 1 March, saw schools, offices, hospitals and pubs mark the start of Brain Tumour Awareness Month in style. Many of our Supporter Groups promoted and organised a bandana day too. At events nationwide, people showed their support by donating £1 to wear a bandana, helping to raise awareness and make Bandanas for Brain Tumours Day a household name. Our own exclusively designed bandanas, sold for £3 each to raise funds, proved incredibly popular and were even endorsed by our Patron, Tom Daley. It’s not too late to raise funds and awareness by holding your own event – visit thebraintumourcharity. org/bandanas for helpful downloads. You can also spread the word online by adding a virtual bandana to your social media profile picture: http://twb.ly/YCUX42 The Grey Matters. Issue 3

If Brain Tumour Awareness Month has inspired your fundraising, be sure to have a look at our top 10 fundraising ideas for summer on the next page. Every penny you raise could save lives. Email fundraising@thebraintumourcharity.org or call 01252 749043 15


Great for little ones

Invite your friends, set out a rug and make sure there's for the teddy bears to s

Car wash Wii-mbledo n party Challenge your friends, family and colleagues to a Wii tennis tournament or take on the professionals. Don’t forget to charge an entry fee.

Paws for pounds Turn your daily walk into a doggy-tastic fundraising event. Get your friends and all their canine companions involved and make a day of it. All you need to do is provide treats for Fido and his buddies for a small donation, or offer to walk Fido's friends for a fee.

SUM O FUNDR

TOP

Whatever you a way to ra

British 10k London Ru

14 July 2

Sign up today: thebraintumourcharity.org/British


s!

a picnic s space sit.

GET WALKING Thames Path Challenge

Twilight Walk

London / 14-15 September

Windsor / September

Email fundraising@thebraintumourcharity.org

Fire up the BBQ

MMER OF RAISING

Pyramid lunch You invite five people for a lunch, those people invite five people to another lunch, then they invite four people, who invite three, who invite two, who invite one person. If each person pays £5 to attend you can raise £8,125. Lunch can be anything you fancy: a sunny picnic in the park, snacks in the garden or a light lunch in the pub.

P 10

ur plans, there's aise money!

k un

2013

h10k

Perfect for a corporate fundraiser.

Summer fête


The Support & Info news

Where you want, when you want it

As a merged charity we offer a much wider range of support and information services. We’re here for you every step of the way... Spotlight on: Disability Living Allowance changes In April some significant changes were made to the benefits system. Over a period of three years everyone aged between 16 and 65 and in receipt of Disability Living Allowance (DLA) will be re-assessed under the new Personal Independence Payment scheme (PIP). The Department of Work and Pensions maintains that the changes are being introduced to help make the system clearer. However, We Are Spartacus, an online campaign group about disabled people’s views on the welfare system, found that only 7% of organisations that took part in the original consultation were fully in support of plans to replace DLA with PIP. At The Brain Tumour Charity we regularly hear stories about the emotional stress and financial hardship experienced by people claiming from the benefits system. This prompted us to add our support to Macmillan’s letter to The Times highlighting concerns about the changes. Here are just two perspectives. The real names of the people featured have been changed.

If you have questions or concerns about the DLA, call our Support & Info Line:

0808 800 0004 Free from landlines and most mobiles. Mon-Fri 9am - 5pm Or email: support@thebraintumourcharity.org 18

Jane After a lifetime of working, Jane was diagnosed with a meningioma in 2007 at the age of 51. She had to give up work in 2009 following treatment. Jane’s life changed dramatically. She felt socially isolated and suffered with depression, headaches, partial seizures and severe fatigue. Jane initially received DLA and Employment and Support Allowance (ESA). In September 2011 she was called for a re-assessment. Many of Jane’s clinical team felt she was not fit for work but she felt as if the decision had already been taken. A hard battle followed and she lost both DLA and ESA. There were days when she could not afford food because of her loss of benefits. Jane appealed and a year later she eventually won back her entitlement. Throughout the process she felt as if she was being punished for having a brain tumour.

Lucy Lucy loved working full time as a nurse but had to give up when she was diagnosed with a brain tumour. She initially received DLA and ESA which reduced her financial worries. In February 2013 her assessors told her she had to return to work. Lucy feels that there is a total lack of understanding about brain tumours and how her symptoms affect her ability to cope in the workplace.

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Information Days Our information days tour the UK, with 10 planned for the coming year. You can meet others affected by a brain tumour, hear talks by health professionals on a variety of topics and enjoy a relaxed lunch with our team. Our next information days are in Nottingham on Tuesday 11 June and Aberdeen on Wednesday 26 June. Sign up and download the programmes: thebraintumourcharity.org/futureinfodays

Life coaching Life coaching aims to give you the confidence to work through problems that might be holding you back. It identifies aspects of your life that you may want to change and helps you work out how to do this. We offer free telephone life coaching to anyone affected by a brain tumour if you feel it could help. Call or email the Support & Info Line to find out more.

Support & Info Line When you or a loved one is diagnosed with a brain tumour it can leave you feeling frightened and isolated. Our Support & Info Line offers a confidential way to ask questions or raise concerns about a diagnosis, treatments and how a brain tumour may affect your daily life. The team can point you in the right direction for further information and local support.

Family days When a child is diagnosed with a brain tumour the impact on family life is wide reaching. Many families do not get the opportunity to spend time together other than in hospital and life can be put on hold. Our family days allow children with a brain tumour, their siblings and parents to meet others in similar situations whilst playing games and laughing together. If you are interested visit thebraintumourcharity.org/familydays The Grey Matters. Issue 3

“Amazing – very informative and just the right amount of science versus support – would definitely recommend to other brain tumour patients and their families.” Delegate, Brentwood information day

Forums We understand that those who have been affected by a brain tumour are often the best source of support and information for others in similar situations. Our discussion forums are a safe space where you can share experiences or knowledge, ask questions and chat to others. They are an active community where people can gain strength and friendship. If you want to get involved visit: thebraintumourcharity.org/forums

Phone support groups Our free phone support groups, facilitated by a member of the Support and Information team, give you the chance to talk with other people affected by a brain tumour about your experiences no matter where you live. The groups take place on a monthly basis, last for one hour and members agree what they would like to talk about. Find out how to take part: thebraintumourcharity.org/phonegroups

“There are things that I share with the phone support group that I wouldn’t share with anyone else.” Phone support group user 19


Support Groups

People have told us that they attend a support group to get confirmation that their feelings are normal, find out information on treatment options and hear about coping strategies.

“When I attended my first support group meeting, I regained my confidence and found a new way of dealing with my illness.�

Our support groups are managed by our four Development Co-ordinators: Gina, Gus, Victoria and Sue.

Tommy, Support Group attendee, Scotland.

We now offer an extensive network of support groups across the UK, most of which meet on a monthly basis. The groups provide a secure environment where you can compare your experiences, good and bad, with other people. All our group members have either been diagnosed with a brain tumour themselves or have been affected by the diagnosis of someone close to them, helping to counter feelings of isolation among attendees. Our groups are also attended by professionals such as specialist nurses and counsellors who can provide practical advice.

Sue

Gina

Gus

Victoria

North and Midlands

Central, East and London

Scotland

South Wales

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Find a support group near you

If you can’t find a support group near you, we also offer free phone support groups. Read more on page 19 or get in touch with the team: Call 0808 800 0004 or email support@thebraintumourcharity.org The Grey Matters. Issue 3

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The Story of Hope

Above: Tim (on the right) in Portugal with husband, John. Right: Tim receives his MBE from the Queen in 2008 for services to criminal justice in Cumbria.

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Tim Frost

“...beating the odds is what I’m all about”

Tim is a volunteer for The Brain Tumour Charity and works to raise awareness and funds in his local area. Earlier this year he was filmed by ITV for a news feature which you can watch online: http://bit.ly/YayPmb I am a rather lucky man. As a 52 year old solicitor and brain tumour sufferer, perhaps you might think that’s a weird thing to say! Having been diagnosed with a granular cell astrocytoma in September 2011 after first suffering blinding headaches on holiday in Croatia, the prognosis didn’t appear too great. There have been 49 previously reported cases of my type of tumour and no survivors. The lucky bit is that approaching two years later, and after a professor estimated a maximum of 8.3 months from diagnosis to death, I’m still here. I decided that I wasn’t going to give into this, despite the odds. My genuine belief was that a positive outlook is worth as much as a large number of pills and treatments. I have confidence that medical science will eventually beat this horrible disease. There is, I’m aware, research ongoing into familial links to cancers and I do think genetics may have a part to play. My father died too early of lung cancer, while I have two sisters and a brother who have also been diagnosed with cancer. I therefore have the greatest faith in researchers to investigate causes and treatments and help the rest of my family in the future. When I received my diagnosis, I clearly remember my initial feelings of disbelief – I thought it was just stress giving me the blinding headaches. I didn’t know where to turn. My family and my partner, obviously, but professional help and guidance weren’t clearly signposted. Had I known of The Brain Tumour Charity’s Support & Info Line and other

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services, I think that I would have been reassured. In fact, my main motivation in volunteering for The Charity was to ensure that others in the same position as me would be well supported and have access to help and information. My older brother said to me that after his diagnosis I was his inspiration to beat cancer. It was a humbling moment. If I could have such a profound effect, then imagine what our charity could do? We need to continue to raise awareness of the devastating effects that brain tumours have on the patient and those closest to them. I am no one special but as I said at the start, I am truly lucky. To have known and experienced the love and support of my loved ones and a legion of friends is amazing and I can never thank them all adequately. The treatment continues to have its challenges but as a criminal lawyer, beating the odds is what I’m all about. Little did I know what lay ahead when the Queen presented me with an MBE for services to criminal justice in Cumbria in December 2008. I am so very proud of that award and my day with my family. It gave me added strength to keep on fighting after my diagnosis. So I want to use my experience of drawing on the support of those around me to help others. If I can, I will have succeeded in something far greater than receiving an award at Buckingham Palace!

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The Corporate support

Making connections, working together

The Brain Tumour Charity is incredibly honoured to be supported by companies across the UK.

WE NEED YOU If you work for a company which supports charities through fundraising, pro bono services or gifts in kind, we would love to work with you. Please put The Brain Tumour Charity forward if you are asked for a nomination or suggest us to your charity committee. Just get in touch to find out more about how we can work together. fundraising@thebraintumourcharity.org 01252 749043

New partnerships... We would like to extend a warm welcome to those companies who have recently chosen to partner with The Brain Tumour Charity. We are excited to be working with you!

• • • • • • • • •

Hays M&C Saatchi The IT Job Board Dunnhumby NM Rothschild CGI Logica Stirling Grey Barclays (Global Payments Change team) HSBC (South East Birmingham branches)

Business lunch Ten businesses from around Farnborough came along to the event which was held on Friday 8 March and hosted by James Arbuthnot, MP for North East Hampshire. As well as attracting businesses that we already have a relationship with, the lunch was attended by some potential new partners including Barons Mini.

Tesco In our last edition of The Grey Matters we reported that Tesco Head Office had raised over £72,000 during November. This total has now leapt to an incredible £88,288. Thank you so much to all involved.

The Brain Tumour Charity friendship bracelet – get yours today We have teamed up with the jewellery company, Silver Republic, to create a stunning bracelet incorporating our brand colours and logo. For every bracelet sold, Silver Republic will donate £2 to us. Order online from silverrepublic.com 24

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...and those that have now come to an end

Thank you

We would like to express our gratitude to several companies who supported us last year:

TRL

Pitmans

LV

TRL chose to support The Brain Tumour Charity last year and raised £3,700.

Pitmans raised over £14,000 during 2012, when we were the chosen charity of their Reading office. From a football tournament to cake sales and quizzes, the fundraising has been endless!

Our partnership with LV in Bournemouth has now finished. It raised £4,500 for The Brain Tumour Charity.

Win money, raise funds Get involved in our weekly Charity Lottery and for £1 you could be in with a chance of winning £25,000 whilst raising funds. Our supporter, Ann Allan, was thrilled to discover she’d won £1,000 recently, just weeks after joining the scheme. thebraintumourcharity.org/ lottery

Support us when you shop If you shop online you can raise funds at no extra cost to you. Through our partner, Give as you Live, thousands of retailers will make a donation every time you make a purchase. thebraintumourcharity.org/ shopforus The Grey Matters. Issue 3

GOLF AT GOODWOOD Thursday 3 October Join us for a great day out and help improve the lives of people affected by a brain tumour. The event is open to all and offers a fantastic opportunity for business networking. Teams of four compete against each other and with an auction, raffle and various games on offer, it won’t be long before your competitive streak comes out! Register your interest or talk to us about sponsorship: fundraising@thebraintumourcharity.org or 01252 749043 thebraintumourcharity.org/ corporategolfday 25


The HeadSmart news The HeadSmart campaign, promoted and funded by The Brain Tumour Charity, aims to raise awareness of the signs and symptoms of brain tumours in children to reduce diagnosis times.

Brain Matters Day, Nottingham Pictured left: Professor Colin Blakemore, President of The Brain Tumour Charity.

On Saturday 16 March, HeadSmart took part in The University of Nottingham’s Brain Matters Day. This was an interactive and informative community day for all ages around neuroscience and how the brain works, including a showcase of cutting-edge research and information from national charities and local support groups. It was well attended and we gave out over 300 HeadSmart symptoms cards and made some useful connections. The day was followed by an evening with Colin Blakemore, Professor of Neuroscience at Oxford University and President of The Brain Tumour Charity. He is a frequent broadcaster on radio and television who has been actively involved in the public communication of science for more than 30 years. Professor Blakemore gave a lecture entitled ‘What’s special about the human brain?’ which was enjoyed by over 300 people.

Know the symptoms on-the-go Text ‘SMART’ to 81400 for your free mobile symptoms guide. 26

Wiltshire leads the way in symptoms cards distribution Wiltshire is the first county in the UK to distribute HeadSmart symptoms cards to every school age child. The media covered the story widely and the feedback has been fantastic. A huge thank you to Danica Marshall and Duncan Hames MP who secured the approval of Wiltshire County Council for county-wide distribution. Following the great example of Wiltshire, other councils are following suit and we hope to roll the programme out across the country with HeadSmart supporters asking their MPs to help get symptoms cards into the school bags of every child.

Run for HeadSmart You can choose to support HeadSmart if you register for any of the runs promoted by The Brain Tumour Charity! Places are going fast so turn to page 29 now to check availability.

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HeadSmart Parliamentary event

Pictured above: Annette Brooke, Lib Dem MP, Mid Dorset & North Poole

During Brain Tumour Awareness Month we took the HeadSmart campaign to Westminster with the support of The Danny Green Fund. 34 MPs signed a pledge board to help raise awareness in their constituencies. We were pleased to see so many of our HeadSmart Community Champions there, who met with their MPs to talk about the campaign. Emma Bassett, Community Champion and brain tumour survivor, gave an inspiring speech while Founder of The Brain Tumour Charity and Vice-Chair, Neil Dickson, spoke about his own reason for being a driving force behind the campaign having lost a child to a brain tumour. We are grateful that so many MPs lent their support to HeadSmart but there is a lot of work to do to get early diagnosis of childhood brain tumours higher on the political agenda. Read more about the Parliamentary event at thebraintumourcharity.org/parliamentaryevent or talk to us about how you can engage your local MP: info@headsmart.org.uk

Song for DD - still available to buy Song for DD was launched on Monday 4 March in memory of inspirational HeadSmart supporter, David ‘DD’ Langton-Gilks, who died last August of a brain tumour aged 16. Inmates at the prison where DD’s dad, Toby, works as a music teacher were so touched by his story and bravery that they wrote and recorded a song as a touching tribute to him. The song was launched at DD’s school in Shaftesbury and was downloaded thousands of times, raising funds for HeadSmart and CLIC Sargent, who supported DD and his family during numerous gruelling treatments. Stephen Fry added his voice on Twitter to hundreds of tweets in support of the song. Why not download ‘Song for DD’ as a gift for Father’s Day? Search for the track on iTunes, Amazon or Spotify.

NHS Innovation Challenge Prize We found out in February that HeadSmart had won a prestigious NHS Innovation Challenge Prize worth £100,000 in the Earlier Cancer Diagnosis category. The prize is awarded for the achievement of an original and significant breakthrough in the early diagnosis of cancer. The prize money will be used by HeadSmart’s research team at The University of Nottingham to refresh guidance for healthcare professionals, contribute towards evaluating the campaign and develop training packages for doctors and nurses. Find out more: thebraintumourcharity.org/headsmartprize The Grey Matters. Issue 3

Song for DD in the news BBC News http://bbc.in/YjrxP5 Daily Mail http://bit.ly/13IObir BBC Breakfast http://bit.ly/13IOrhd 27


The Fundraising news

Funding the fight

Triumph at the London Marathon A team of 60 took on the Virgin London Marathon for The Brain Tumour Charity in April, raising over £150,000 for research. We turned out in force to cheer our runners along the route and hosted a reception afterwards for the tired athletes. It was an inspirational day in the sun for The Brainy Bunch. Take a look at our photos via http:// on.fb.me/13GFHbt or apply for one of our 2014 places at thebraintumourcharity.org/ londonmarathon

Walking over hot Trekking the Great Wall of China coals for research In April, Kate Gilbert and six of her friends set off to trek the A brave group of fundraisers from all over the country, including Jess Tres from The Brain Tumour Charity staff team, took part in our first Firewalk, raising £7,000. The team of 20 walked barefoot over burning embers at 1200°F to support The Brain Tumour Charity. See photos of the Firewalk: http://on.fb.me/13GVg6J If you missed out on taking part this time, keep checking our website, e-news and social media for details of another Firewalk this autumn.

Great Wall of China. Kate wanted to do something special to celebrate her dad who she lost in 2002, while others in the group had also been affected by the diagnosis of a brain tumour. Though the trek challenged the team physically and emotionally every day, they were inspired to keep going by the cause and the like-minded people they met. The team raised over £20,000 for The Brain Tumour Charity. Our Supporter Groups Officer, Katie, also trekked the Great Wall recently, raising £1,500.

“If you’ve read this and thought I want to do that, do it! It is the most rewarding thing I have ever done and I have come away with memories I will treasure forever.” Kate Gilbert

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Where have The Brainy Bunch been running recently? Silverstone Half Marathon

Fleet Half Marathon

Brighton Marathon

Over 30 people ran for The Brain Tumour Charity at this world-famous venue on Sunday 3 March, helping to kick start Brain Tumour Awareness Month.

Our runners, including a large group from Truly Scrumptious Beauty Salons, braved incredibly rainy conditions on Sunday 17 March to run a Half Marathon in and around Fleet.

On Sunday 14 April 34 runners took on the second largest marathon in the UK. Our fastest runner on the day has already signed up for next year.

Together these fantastic runners have raised a whopping £28,000! A huge well done to all who took part. Inspired? We’ve still got places in these runs... Manchester 10k Sunday 26 May 2013

Berlin Marathon Sunday 29 September 2013

Great South Run British 10k London Sunday 27 October 2013 Sunday 14 July 2013 Sign up now before they go! Email fundraising@thebraintumourcharity.org or visit thebraintumourcharity.org/runs

Moroccan Three Peaks

Take on the world’s largest and most iconic triathlon! Virgin Active London Triathlon 27-28 July 2013 More info: thebraintumourcharity. org/triathlon

20 – 29 September 2013 Sign up today to conquer the High Atlas Mountains of Morocco in a once in a lifetime challenge. You’ll trek through beautiful valleys, charming villages and mountain streams as you scale the highest peaks in North Africa. For more information visit thebraintumourcharity.org/challenges If you’d rather fundraise for The Brain Tumour Charity with an amazing challenge in the UK, check out our website or browse discoveradventure.com The Grey Matters. Issue 3

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Our fundraising heroes This is just a small selection of the activities our amazing fundraisers have been up to...

When Amy’s husband to be, Gary, was diagnosed with a brain tumour two years ago, she was determined to incorporate a fundraising event into her hen weekend. So eight women of varying ages and levels of fitness decided to take on the snow and ice in Snowdonia National Park. They had never before set themselves a tough physical challenge but completed a gruelling walk and climb in March and raised over £3,780. Diagnosed with a brain tumour last year, Martin Bacon set himself a series of challenges including the Swavesey five mile road race in Cambridge. He has already raised £5,775. Nigel Botterill gave a business talk and used the popular music quiz, Hit or Miss, to raise £7,000. Hazel Cook organised a coffee morning at her office at Scottish Natural Heritage in memory of a colleague and raised £437. Jo Osborn raised £440 from a vintage tea party she held in her local village hall.

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Thank you

Gill Ward and Stacey Holmes organised the successful BiGMAN Festival and raised £1,900 in memory of Christopher Ward, Gill’s son and Stacey’s boyfriend.

Charlotte Knowles held a charity quiz at Milton Regis Conservative Club and raised £648 as part of Brain Tumour Awareness Month. They plan to make this an annual event. Blue Rubicon took part in a skydive and have raised over £10,000 so far towards oligodendroglioma research. David Cross swam a distance equivalent to the English Channel and back in Chesham open air swimming pool and has raised over £2,000 so far in memory of his friend Frances.

A group of 14 raised £8,107 by taking on a skydive over Salisbury. The team included The Brain Tumour Charity staff members, Lizzie, Kat and Lucy.

Jack Monaghan recently held a boxing match in memory of Aoife O’Connor and raised £500. The Grey Matters. Issue 3


The corporate team from O’Neill’s raised £2,000 taking on a series of challenges in each of their pubs over the St Patrick’s Day weekend.

Joel Peters, his brother Dale and six friends took on the Commando Challenge in the Lake District. They covered nearly 50km by canoe, foot and bike to raise nearly £4,000.

Jill Collins held a collection and raised £355. Deb Harvey organised a vintage tea party in memory of Patricia Mitchell and raised over £650. Liam Kelly and his team held a bake sale at the office and raised £165. Geraldine Pipping held a fashion show at her shop, Scarlet Monroe in Marlow, and raised £500.

Alan Hopps sells his photos to companies in Northern Ireland who use them for a calendar.

The girls of Class 10Y at Withington Girls’ School near Manchester raised £408 by selling Candy Cane treats to friends and families. Dawn Smith organised a spray tanathon and raised £1,500 through fundraising group, Bare All for Brain Tumours. James Jones-Cross, who plays for the youth team at Birmingham Bulls American Football Club, has been growing his hair for years but went to the barber to raise over £600.

Carol Ann Rutherford, who was diagnosed with a brain tumour last year, walked the Greensand Ridge from Leighton Buzzard to Gamlingay accompanied by a 40-strong team. They covered a total of 47 miles over three days in April and have so far raised over £3,200, with an expected target of £5,000. The Grey Matters. Issue 3

No matter how much you raise, we sincerely appreciate all your hard work. Together we can beat this devastating disease. 31


Saving lives through research, information, awareness & policy

thebraintumourcharity.org 01252 749990 enquiries@thebraintumourcharity.org

Registered office: Hartshead House 61-65 Victoria Road Farnborough Hampshire GU14 7PA 01252 749990 thebraintumourcharity.org

Charity no. 1150054 (England and Wales) SC042096 (Scotland)

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We rely 100% on voluntary donations Yes, I pledge to help change lives by becoming a regular donor

Please pay The Brain Tumour Charity the sum of: ☐£25 ☐£10 ☐£5 ☐ Other £ ____________

☐ I agree that The Brain Tumour Charity can claim Gift Aid on this and

☐ per month ☐ per quarter ☐ per year

Account Name ___________________________________________ Account No. _____________________ Sort Code _____________ Bank Name _______________________________________________ Bank Address ____________________________________________ ______________________________________Postcode____________ Start date for payments: __ __ / __ __ / __ __ Name ______________________________________________________ Address ___________________________________________________ _______________________________ Postcode __________________

all the donations I have paid in the last four years and all donations I make from the date of this declaration until I notify you otherwise. I confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax for the current tax year (6 April to 5 April) that is at least equal to the amount of tax that all the charities and Community Amateur Sports Clubs (CASCs) that I donate to will reclaim on my gifts for the current tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 25p of tax on every £1 that I have given.

The funds £250

Email ______________________________________________________ Phone _____________________________________________________ Signature __________________________________ Date ________

Yes, I pledge to help change lives by making a single donation

£100

☐£250 ☐£100 ☐£50 ☐£25 ☐ Other £ _________ ☐ I wish to donate by cheque (made payable to The Brain Tumour Charity)

☐ I wish to donate by credit card Card Type: ☐Visa ☐Mastercard ☐Maestro ☐Visa Debit ☐CAF

For bank use only to The Brain Tumour Charity, Lloyds TSB. Account No: 50290568, Sort Code 30-93-74

Complete this form and post it to: The Brain Tumour Charity, Tower House, Latimer Park, Chesham, Bucks HP5 1TU Registered Charity no. 1150054 (England and Wales) SC042096 (Scotland)

£100 could fund a support group meeting for people living with a brain tumour and their families. This allows them to ask questions and share stories with people in similar circumstances, gaining invaluable support from peers and healthcare professionals. £50 could contribute to the funding of a crucial clinical trial co-ordinator who sets the trial up, runs the patient recruitment and processes the critical data produced from the trial.

£25

£25 could cover the cost of providing the essential information needed by someone currently living with a brain tumour.

Start date: __ __ / __ __ Exp date: __ __ / __ __ Signature __________________________________ Date ________

£250 could help cover a day’s research for one of our leading brain tumour researchers to further the understanding of a particular type of brain tumour to provide more targeted treatments.

£50

Card Number: ____________________________________________ Issue No: __ __

Make your donation worth 25% more!

You can also donate online at thebraintumourcharity.org □Please □ tick this box if you don’t wish to be kept up-to-date with our work and how your donation is helping. We do not share your details with third parties.


Thank you for your ongoing support. Together we can beat brain tumours. If you wish to make a donation to support our vital work, please complete the form overleaf and return to the address below. Alternatively, you can donate online: thebraintumourcharity.org/donate If you know someone who would like to support our work why not detach this form so they can make a donation? You could also give them your copy of this newsletter so that they can see the impact of our work. If you would like more copies please contact us: enquiries@thebraintumourcharity.org 01252 749990 For queries about making a donation: donations@thebraintumourcharity.org 01494 549188 Please return your donations to: The Brain Tumour Charity Tower House Latimer Park Chesham Bucks HP5 1TU

Charity no. 1150054 (England and Wales) SC042096 (Scotland)

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The Grey Matters, Spring/Summer 2013