NEWS THE GREY MATTERS ISSUE 21 WINTER 2019 Groundbreaking research Sherrie Hewson on her most important role Living well when you have a brain tumour ISSUE 21 1 WELCOME CONTENTS Hello I’m delighted to welcome you to issue 21 of The Grey Matters. CONTENTS As you can see, we’ve made some updates to the format and content of the magazine, having listened to your ON THE COVER thoughtful feedback. That’s why you’ll now see sections focused wholly on research and dedicated to the experience of living with a brain tumour. We really hope you enjoy reading it! In these politically and economically uncertain times, it’s more important than ever that we unite as a community to achieve our goals: doubling survival and halving the harm of brain tumours. Only together can we accelerate a change. In the following pages, you can read about just some of the transformative projects we’re developing and funding. We aim to From BRIAN, our innovative brain tumour databank (pages 6-7) to our latest round of research grant awards (pages spend at 12-13), we’re determined to keep driving progress until least 80p of we create the step change needed to find a cure for this every pound disease. 08 16 18 spent on our GROUNDBREAKING SHERRIE HEWSON ON HER LIVING WELL WHEN YOU There’s also a range of people’s stories and experiences RESEARCH MOST IMPORTANT ROLE HAVE A BRAIN TUMOUR £1 charitable of living with a brain tumour, and their tips on coping with objectives. common symptoms and issues, such as fatigue (page 15). Find out how our researchers are Loose Women and Benidorm star From starting something new to working to overcome the blood–brain Sherrie Hewson speaks of her coping with the changing seasons – You’ll find our 2019 Christmas brochure enclosed with this barrier and see some of the exciting heartbreak at her “wonderful” read others’ tips and experiences on issue too, packed with an inspiring selection of cards and new grants we’re funding. brother Brett’s glioblastoma diagnosis. living well with a brain tumour. gifts that will help us move faster towards a cure. Last year, we raised an outstanding £70,000 – that’s enough to fund more than nine months of pioneering research! Less than Finally, we all know how easy it can be to put things off. WHAT’S INSIDE Making or updating your Will can often be one of them. Why not make today the day you take advantage of our free guide? It has information on making a Will, our free RESEARCH LIVING WELL REGULARS Will-writing services and how you can leave a gift. Just 3% visit: thebraintumourcharity.org/gift-in-will 06 BRIAN is coming, how 20 New beginnings after 04 News We’re going further every day in the fight against brain you can get involved diagnosis of money tumours. A cure can’t wait – together, we know we can invested into get there. 26 To myself before 10 How the blood-brain 22 What to eat during the diagnosis cancer research Thank you, barrier works treatment in the UK 28 Ask the experts goes on brain Sarah Lindsell 11 Spotlight on research 24 Seasons to be cheerful tumours. CEO 30 Your letters 12 Our latest grants 31 Upcoming events 14 Fighting fatigue 02 ISSUE 21 ISSUE 21 03 NEWS NEWS CAMPAIGNING FOR CHANGE Our Campaigns and Policy team have been driving change across the UK for the brain tumour community. After campaigning alongside Dame Tessa Jowell to call for the rollout of the surgical aid 5-ALA (the ‘pink drink’), we were thrilled to hear in January that it would be made available in Wales. All adult patients with a high grade glioma in the UK should now be able to access it if appropriate. In Scotland, we’ve been working with Cllr Ryan Smart to ensure our HeadSmart campaign is launched in Fife. This follows a unanimous council motion earlier this year. In Northern Ireland, we’ve joined forces with the Department of Health, alongside other cancer charities, to develop a cancer strategy. As the only UK nation without one, it’s vital we get the voices of our community heard while this strategy is written. USING AI TO And finally, we’ve met with important political stakeholders to emphasise DIAGNOSE BRAIN the vital needs of brain tumour patients in discussions around Brexit. NEWS TUMOURS Stories about artificial intelligence (AI) CELEBRATING YOU 2020 have started to appear regularly in the news, so it’s exciting to report on one of our funded researchers using it to Celebrating You, our community awards event, returns in May 2020. help defeat brain tumours. And nominations are now open! THE TWILIGHT WALK TRANSFORMING OUR Dr Phedias Diamandis and his Toronto- Celebrating You is all about celebrating and recognising you: our inspirational IS BACK! BENEFITS CLINIC based team have shown that AI can and dedicated community. It’s our chance to say a heartfelt thank you for going be used to diagnose different types above and beyond to move us closer to a cure. Want to help us propel progress and One way we’re striving to halve the of brain tumours, as well as specific make a life-changing difference to harm brain tumours have on quality features and patterns within them. people affected by a brain tumour? of life is by ensuring our community We know there are so many people out there who deserve special recognition for their outstanding contribution to the cause. But we need your help! If you Join us for The Twilight Walk this has access to the financial help To achieve this, the team showed the know someone who’s been tireless or relentless in their efforts, nominate them autumn! they’re entitled to. AI program 838,644 images of brain in one of our award categories today. tumour samples, across 1,027 patients. This inspiring event sees our In 2017, we launched our benefits You can nominate someone for Volunteer of the Year, Influencer of the Year, community unite for one common clinic to do just that, partnering with Normally, a pathologist will make Fundraiser of the Year, Young Fundraiser of the Year or Partnership of the Year. goal: to help accelerate a cure and Citizens Advice Rushmoor to provide a diagnosis by looking down a ensure no one has to face this a weekly phone clinic giving specialist microscope at a small tumour sample. Visit: thebraintumourcharity.org/celebrating-you to submit your nomination. diagnosis alone. guidance to the benefits system. But this means that diagnosis is quite subjective and could easily be Sign up to one of our 10km walks in We’re thrilled to announce - thanks different, depending on who looks Warwick (29 September), Windsor to our generous donor, the AOK Trust at the sample. (6 October) or Edinburgh (13 October), - that we’re now offering this service or hold your own walk of any length two days a week, with appointments The advantage of AI is that diagnoses in a location that’s best or most available on Tuesdays and Thursdays will be more consistent and it can also meaningful to you. from 9.30am to 4.00pm. And our recognise patterns that aren’t visible advisors can also now offer their to the human eye. Side by side and stride by stride, expert guidance on a wide range your footsteps will help lead our of strategies to help you save money. search for a cure! Visit: thebraintumourcharity.org/ Visit: thebraintumourcharity.org/ benefits-clinic to find out more and thetwilightwalk to sign up. book an appointment. 04 ISSUE 21 ISSUE 21 05 NEWS NEWS THE JOURNEY BRIAN IS COMING SOON! TO BRIAN You may have seen WHAT IS BRIAN? THREE THINGS THE The project With this project, previous updates begins! We hold We’ve worked hand-in-hand with DATA WILL TELL US from us on BRIAN (Brain JUN 2017 our first Patient researchers will for the first people living with a brain tumour Mandate Group. tumouR Information and and their carers to build BRIAN. 1. Patients and carers will be able time have access to large Analysis Network), our It will allow those affected to share to view their data combined with their healthcare records with pioneering brain tumour the anonymised clinical data from Patient amounts of data from lots of researchers, upload information databank. BRIAN is a free, national datasets. BRIAN will allow recruitment about their treatments and quality you to share your experiences, starts – we have patients. This is game-changing global web-app enabling of life, and view aggregated data JAN 2018 learn from others and make 640 consents patients to make better- and reports on others’ experiences, choices about your treatment to date. for research into brain tumours. all through a secure web-app informed decisions about and care that are right for you. their care and accelerate accessible on laptops, tablets Dr Paul Brennan, The University of Edinburgh and smartphones. research to find a cure. 2. BRIAN will let healthcare BRIAN gets professionals compare their Research Ethics Now, we’re absolutely The web-app is what people see, performance against other AUG 2018 Committee but that’s just the tip of the iceberg. thrilled to announce that centres, highlighting differences approval. it’s launching very soon! The real power of BRIAN comes in service provision. This will allow from the databank sitting behind clinicians to share best practice the scenes. and promote better delivery and We receive improved effectiveness within oct 2018 8.2 million NHS the healthcare system.