The GREY MATTERS Research | Awareness | Support Issue 16 Autumn 2017
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The Brain Tumour Charity shining a light on The GREY MATTERS Research | Awareness | Support Issue 16 Autumn 2017 Driving Breakthroughs “I can’t thank the HeadSmart campaign enough” 20th Anniversary Celebrations thebraintumourcharity.org How we spend your money £1 80p of every 20p is spent on £1 you raise goes raising funds for HeadSmart on our charitable future work and crowned winner! objectives governance We’re very excited to announce that our HeadSmart campaign On the cover has won the National Lottery Good Causes Health Award! Driving Breakthroughs..........................4 On 1 September, TV presenter “I can’t thank the and singer, Rochelle Humes HeadSmart campaign enough”..........10 visited our offices to surprise 20th Anniversary Celebrations.........20 us with the announcement that we had won £5,000 to go towards the campaign and presented us with an iconic trophy. Don’t miss... This award means so much to Q&A with Dr David Jones......................8 us as we continue to drive down diagnosis times and save lives. Meet the Researcher……………......…..11 My personal Everest……......................16 We’re incredibly grateful to each and every one of you who took Coming together for Christmas……..18 the time to vote. BBC One Lifeline Appeal…………....…33 2 The Grey Matters Issue 16 Hello Welcome to the 16th issue of The Grey Matters. As one of the founders of The Charity, this year holds particular significance to us as it marks the 20th anniversary of the launch of the Samantha Dickson Brain Tumour Trust – set up in memory of our daughter Samantha, who sadly died from a brain tumour aged 16. Samantha was the hub of our family. She kept everyone in order and made sure our life and our household was always filled with laughter. When she eventually lost her brave fight it would have been so easy to have Particular highlights for us include helping dropped into doom and gloom, but we to cut the average childhood brain tumour took on her courage and decided to do diagnosis time in half thanks to our something positive in her memory to help HeadSmart campaign, the opening of the fight the disease that tore our family apart. Samantha Dickson Brain Cancer Unit at University College London and the funding In 1997, we set up the Samantha Dickson of PhD student David Jones, who has gone Brain Tumour Trust and later merged on to become one of the most talented with The Joseph Foote Trust and Brain brain tumour scientists in the world. Tumour UK to become The Brain Tumour Charity, the largest brain tumour charity Samantha was always helping others, and in the world. we think she would have been proud of everything that The Charity has achieved. Over the last two decades we’ve felt incredibly proud of how much To us, she is, and always will be, “the wind The Charity has gone on to accomplish. beneath our wings”. Neil and Angela Dickson MBE, Founders The Grey Matters Issue 16 3 Driving Breakthroughs As we continue to pave the way for a transformation in the treatments and quality of life available for those affected by a brain tumour, we’re thrilled to have awarded over £3.8 million to five forward-thinking, patient-focused initiatives £3.8 across the globe. million Quest for Cures awards In order for us to accelerate more By building global collaboration between quickly towards our twin goals, of multi-national and multi-disciplinary teams, doubling survival and halving the harm we’re able to fund the very best scientific that brain tumours have on quality of and clinical research available and speed life, it’s imperative that we build strong up the time it takes to turn discoveries into networks and work collaboratively treatments and cures. with global experts. The impact this could have for those That’s why we’re proud to be supporting affected by a brain tumour could be pivotal. world-class researchers in the Netherlands, and Canada, as well as in the UK for our Quest for Cures – Collaborative Discovery Teams initiative. 4 The Grey Matters Issue 16 Developing therapeutic options for clinical trials Dr Gelareh Zadeh, Accelerating the University of Toronto, Canada development of Meningiomas are one of the most new treatments common primary brain tumours, yet Professor Thomas Würdinger, treatment options for those with clinically VU University Medical Center, aggressive meningiomas (CAM) are Netherlands severely limited. In fact, little research whatsoever has been carried out to Over 50% of brain cancer patients are understand the makeup of these tumours. diagnosed with a glioblastoma. Working With a team of experts based around with Dr Colin Watts, who is based at the world, including in Cambridge and The University of Cambridge, Professor Liverpool in the UK, Dr Zadeh will look Würdinger’s team aims to find new at the genetic characteristics of these combinations of drugs that kill the tumours. The researchers will study tumour different types of abnormal cells found samples from patients who suffered a in this tumour type. The team will create recurrence despite radiation and surgery. models to test new and existing drugs They will then link this scientific data to to see how they work alone and in clinical data, enabling them to see the effect combination. This research will build of these tumour-driven molecules on the on the work of GLASS – a global network whole person and their quality of life, not studying glioblastoma progression – just the tumour itself. creating a follow up network that focuses on finding cures for glioblastomas. This information could be used to develop vital new treatments for If successful, Professor Würdinger, future clinical trials. Dr Watts and the team hope that this project will accelerate the development of new drugs and the testing of these drugs within the UK. The Grey Matters Issue 16 5 Quality of Life awards Following on from the launch of our second Quality of Life awards. These research strategy, A Cure Can’t Wait, projects will address key quality of and the findings from several of our life issues affecting those living with landmark surveys, we’re delighted a brain tumour, including fatigue and to have awarded funding to three emotional well-being, and will work exciting initiatives as part of our towards drastically improving these. Improving life for children with medulloblastoma Professor Colin Kennedy, Developing a self- The University of Southampton management programme The clinical trial, SIOP-PNET5-MB, Professor Linda Sharp, is designed to improve treatments for The University of Newcastle children who’ve recently been diagnosed with ‘standard risk’ medulloblastoma. Professor Sharp and her team will develop Professor Kennedy’s team will study the a supported self-management programme effects of these treatments on participants’ to help improve the quality of life for quality of life. Children and parents adult primary brain tumour survivors. The will answer questions before and after team will work with health professionals, treatments via a web-based platform. survivors and carers to design a self- Health professionals will then analyse management programme specifically for this data and implement it into the clinical people with brain tumours. By encouraging trial to make improvements. The study active participation from those living with hopes to reduce behavioural and hearing the tumours in their own rehabilitation, defects, as well as learning difficulties and Professor Sharp hopes to minimise the to improve quality of survival for children adverse effects of their illness and with ‘standard risk’ medulloblastoma. promote their well-being. 6 The Grey Matters Issue 16 Together, let’s put a spring in our step! Reducing the effects of fatigue Dr Alasdair Rooney, The University of Edinburgh Many studies show that fatigue is the most common problem experienced following treatment for a brain tumour. Dr Rooney and his team will look at whether lifestyle Every event you take part in for changes can help combat the effects of The Charity, whether it’s a run, fatigue. Patients taking part will be split bike ride, swim or skydive means into three groups. The first group will have that we can fund vital research an interview to boost their motivation and initiatives like these. then be advised by a specialist personal trainer on their diet, eating, resting, stress So if you’re lucky enough to get a and exercise habits. The second group sporting place, be it for a marathon won’t have the interview but will receive or any other event, we’d be honoured advice, while the third group won’t receive if you’d consider taking part on behalf any extra measures. of The Brain Tumour Charity. Dr Rooney hopes to see whether making Every challenge you tackle, no matter lifestyle changes could reduce the effects how big or small, puts a spring in of fatigue and improve the day-to-day our step, moving us closer towards quality of life for those experiencing it. defeating brain tumours. Thank you! To find out more about these extraordinary Find out more at projects, visit thebraintumourcharity.org/ thebraintumourcharity.org/events new-research-initiatives The Grey Matters Issue 16 7 Q & A with Why is this research so important? Low grade tumours have been Dr David Jones understudied (and underfunded) for a long time. These tumours are the most Lead Researcher for The Everest Centre common brain tumour type in children, for Research into Paediatric Low Grade and often impose a life-long burden on Brain Tumours. those affected and their families. Through our work at The Everest Centre, we want Can you tell us a little bit about to improve not just the quantity but also the research you will be leading the quality of survival.