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NEWS THE GREY MATTERS ISSUE 22 SPRING 2020 Research into biomarkers Nicki Chapman on dealing with her diagnosis Managing relationships ISSUE 22 1 WELCOME CONTENTS Hello Welcome to issue 22 of The Grey Matters and your first instalment of 2020! CONTENTS The new year is often a time of new beginnings, or at least a new type of normal, as we reflect on the year just gone ON THE COVER and make resolutions for the months ahead. That theme runs throughout this issue. In this edition, we’re shining a light on biomarker testing and molecular diagnoses, an emerging field of research that promises new hope for better treatments and improved quality of life for people diagnosed with a brain tumour. The new discoveries happening in this field are incredibly exciting, and we hope this will lead to adults and children with high or low grade tumours benefitting from better- planned and more personalised therapies in the future. We aim to We’re proud to have awarded funding to several world-class We will spend projects that involve biomarkers (see page 13). We couldn’t spend at at least 80p do this without you. least 80p of of every pound every pound We also spoke to a range of people living with a brain 06 16 20 spent on our tumour about their experiences. On page 24 you can read spent on our RESEARCH INTO NICKI CHAPMAN ON HER MANAGING CHANGING about how three of our supporters have moved forward charitable BIOMARKERS £1 charitable and regained their self-esteem after the effects of their BRAIN TUMOUR DIAGNOSIS RELATIONSHIPS objectives. brain tumour or its treatment knocked their confidence. objectives. Find out how biomarkers are making TV presenter and radio broadcaster Advice and tips for coping with And on page 28 another supporter, Gemma, talks about a difference to treatments. This Nicki Chapman talks about the shock changes to relationships. This section how she began a new chapter of her life post-diagnosis section also includes how our online of her diagnosis and how it affected also includes tips on regaining when she had her baby son, Hudson. app, BRIAN, is making an impact. those close to her. confidence after diagnosis. It’s because of your previous support that we’ve been able WHEN YOu’ve FINISHED to make strides towards our goals of doubling survival and Less than halving the harm that brain tumours have on quality of life – so, from all of us, a big thank you. Now, we’re heading WHAT’S INSIDE M WITH this AGAZINE, into 2020 more determined than ever to achieve our vision PLEASE share IT! of a world where brain tumours are defeated, which means funding more of the best research and supporting more RESEARCH LIVING WELL REGULARS people than ever before. It will show others the difference we make, together. 08 What are biomarkers? 20 Managing relationships 04 News We rely 100% on voluntary donations to help us drive 3% It’s only with your continued support that we’ll be able to change. If you receive this magazine and would like drive forward progress and reach a cure quicker, so we’d 09 Common brain tumour 24 Regaining confidence after 26 Ask the experts to join our movement, you can make a donation be incredibly grateful if you’d consider supporting us again biomarkers diagnosis in the following ways: of money invested into this year. And we’d love to hear from you, so please don’t 28 To myself before the hesitate to get in touch! 10 How do biomarkers affect diagnosis Online: thebraintumourcharity.org/donatecancer research the clinic? in the UK Phone: 01252 237792 Thank you, 30 Your letters Post: The Brain Tumour Charity,goes on brain 12 Our latest research: Sarah Lindsell Hartshead House, tumours.61-65 Victoria Road, progress updates and new 31 Key dates Farnborough, Hampshire GU14 7PA. CEO grants 14 BRIAN is making an impact 102 ISSUE 22 ISSUE 22 2 NEWS NEWS INFORMATION PACK REFRESH We’ve refreshed our Brain Tumour Information Pack for adults, which includes DNA ‘FLAGS’ COULD a wide variety of resources to help our community understand their diagnosis and feel more confident about talking to their medical team. CHANGE CHILDREN’S NEWS BRAIN TUMOUR Based on your feedback, the four updated booklets in the pack - Brain tumours: the basics; Tumour types and treatments; Living well with a brain tumour; TREATMENTS and A guide for family and friends – are more practical and interactive. The booklets feature tips from our community and healthcare professionals, We recently had some exciting news as well as clear steps on where to go for more information. about how research we fund is improving diagnoses and treatments We’ve also included two Deliciously Ella recipes from our high-profile supporters, for children with a high grade brain THE BIG BAKE OUR WINTER APPEAL Ella and Matt Mills. tumour. Professor Thomas Jacques, at the UCL Great Ormond Street IS COMING! We want to say a huge thank you While our Information Pack is helpful to those of you who’ve recently been Institute for Child Health, found to those of you who donated to On Friday 6 March, people across diagnosed, it’s also suitable no matter where you are on your journey and that a laboratory technique called our Winter Appeal over the festive the country will be donning their however you, as well as your friends and family, have been affected. methylation testing can help make season and new year period, aprons and dusting off their cake diagnoses more accurate and even including through The Big Give stands to help us raise money to Our updated Brain Tumour Information Pack will be available online from the change treatments. Christmas Challenge. accelerate a cure for brain tumours. spring, by going to thebraintumourcharity.org/information-pack Traditionally, childhood brain tumours Thanks to the unprecedented have been diagnosed and categorised We’d love you to take part in The Big response from our community, following microscopic examination Bake at home, at work or anywhere we were thrilled to hit our target. BREXIT: WHAT HAPPENS NEXT? of cells within the tumour. However, you fancy. And it doesn’t have to be We’re delighted to report that recent developments mean that on 6 March - you can hold your bake December’s general election delivered a significant majority for Boris Johnson, we’ve raised a tremendous scientists can analyse methylation on any day during the month. meaning that, as we went to press, the UK was set to leave the EU by 31 January. £147,000 so far, with £103,519 – effectively a ‘stop-go’ flag in parts At that point, we’ll enter a transition period until 31 December 2020, while the of this total donated through The of the DNA, which says if it should be You don’t need to be a whizz in the future relationship between the UK and the EU is being negotiated. Big Give Christmas Challenge used or not. Methylation can either kitchen to get involved. You can bake (including Gift Aid). That’s enough help or hinder tumour growth. it, fake it or get others to donate it. However, there are numerous matters still to be addressed, so that the needs to fund more than one year of of the brain tumour community are met. It’s unclear how the UK will collaborate a world-class research project When Prof Jacques matched the new We’ll provide everything else you with the EU on scientific research, while a new immigration scheme must enable at a leading UK institution, to find information to clinical trials he and his need, from balloons and bunting EU researchers to come to the UK. new and safer treatments. colleagues are planning, he estimated to fundraising tips to boost your that in the near future a different takings. Order your free pack now Although the Government has previously committed to participation in future This money will go a long way towards treatment may be available for up to at thebraintumourcharity.org/ multinational EU clinical trials, the UK also needs to align with new EU trial helping us find a cure faster and 10% of the children diagnosed. thebigbake – which includes regulations. And, given that the NHS relies on EU staff to help fill some of the bringing hope to everyone affected a special packet of coffee, thanks vacancies in its workforce, it can’t afford for these professionals to leave. by a brain tumour, so we’re incredibly Visit: thebraintumourcharity.org/ to a generous donation from our grateful for your generosity. dnaflags for more information. partner 200 Degrees Coffee. Visit: thebraintumourcharity.org/brexit for more information. 3 ISSUE 22 ISSUE 22 4 RESEARCH RESEARCH The last few decades have seen growing understanding among RESEARCH scientists of the role genes play IN FOCUS in brain tumour behaviour. THE POWER OF BIOMARKERS 5 ISSUEISSUE 2222 ISSUE 22 6 RESEARCH RESEARCH WB hat are IOMARKERS? COMMON BRAIN TUMOUR BIOMARKERS Cell Chromosome Nucleus BRAF 1p/19q CO-DELETION MGMT METHYLATION BRAF testing can be done on tumours The 1p/19q test is suitable for Testing for MGMT methylation helps in children and adults to help confirm people with an oligodendroglioma to predict how effective chemotherapy some diagnoses and to predict how brain tumour. It looks at genetic is likely to be for people with high fast the tumour is likely to grow. changes to your chromosomes. grade gliomas (including glioblastomas and anaplastic gliomas). In children, BRAF testing (for the Each cell in your body has 23 pairs mutation KIAA1549-BRAF, or V600E) of chromosomes, which carry your The test looks at whether a gene can help determine whether their genes (DNA).
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