The Brain Tumour Charity shining a light on The GREY MATTERS Research | Awareness | Support Issue 13 Autumn 2016 Investing in new research A united approach to patient data Defeating brain tumours: one year on thebraintumourcharity.org Hello I’m proud to bring you the latest issue of The Grey Matters, packed with developments that have taken place since I’ve been in Rio. I’ve been involved with The Brain Tumour Charity since losing my dad, Rob, to a brain tumour in 2011. The Charity provided my family with incredible support and I’m honoured to give something back. Whenever I speak to someone from our community, I’m always touched by an overwhelming sense of determination to On the cover unite together and defeat this devastating disease. Investing in new research .............................. 4 It’s amazing how far we’ve come. When A united approach to patient data ............. 12 my dad was first diagnosed in 2006, It’s not too late to sign Defeating brain tumours: one year on ...... 14 things were very different. Support Something for and information, funding, collaborative up to The Twilight Walk research and the chance to meet others every occasion going through the same experience were #WalkWithUs this October! Don’t miss... few and far between. We’re excited to have expanded our My personal Everest ........................... 16 online shop with a brand new range of If you’re looking for a fun and easy- It’s beginning to look a lot like Competing in the Olympics always beautiful greeting cards, canvas bag and going fundraising challenge, then Christmas ................................................18 reminds me of how important teamwork a new occasion favour – perfect for any this is the event for you! Join us is, and I’m so proud to be part of a united celebration or to simply let someone as we return to Warwick, Chester We’re here to help ............................... 20 brain tumour community that is working know that you’re thinking of them. and Windsor – your three favourite Benefits Clinic in action.......................21 together to reach our goal. locations – to walk 10k through the Don’t forget, every time you shop historic streets at sunset and stamp HeadSmart news ................................. 24 We still have a long way to go, but I hope with us you’re helping us to defeat out brain tumours for good. Volunteer focus: Emma ...................... 27 the features in this issue inspire you to do brain tumours! all you can to continue our battle. To join the thousands of others taking Updates from The Lewis Happy shopping! part, visit Moody Foundation ..............................30 thebraintumourcharity.org/ Tom Daley thebraintumourcharity.org/shop thetwilightwalk Thank you to #TheBrainyBunch ......34 Patron of The Brain Tumour Charity 2 The Grey Matters Issue 13 The Grey Matters Issue 13 3 Combatting the side Investing in new effects of cerebellar research tumours Mr Conor Mallucci, We’re delighted to have just awarded funding to three Alder Hey Children’s Hospital new research initiatives, focussing on quality of life. Mr Mallucci is using a surgical approach to investigate Cerebellar Mutism Syndrome Improving treatment In the last issue of The Grey Matters, (also known as CMS and Posterior strategies for we announced that we’d just invested Fossa Syndrome), a serious and poorly £4.3 million in new and exciting research. understood side effect seen in 25% of medulloblastoma We’re proud to now unveil the final three children who have tumours removed from Professor Chris Clark, initiatives that make up part of this the cerebellum – located at the very back Institute of Child Health, UCL investment. of the skull. Professor Clark is using DTI – Diffusion These new patient-focussed initiatives Mr Mallucci hopes to develop a greater Tensor Imaging; a technology which all address quality of life issues and we’re understanding of CMS so that children’s measures the flow of water around the looking forward to working with leading treatment and quality of life can be brain – to explore which areas of the researchers across the country. This will Enhancing communication improved. brain can be affected during treatment help us get closer to achieving our goal of and quality of life for medulloblastoma, causing symptoms halving the harm of those affected, sooner. of CMS. Professor Colin Kennedy, As always, it’s only thanks to the support The University of Southampton He hopes to define areas of the brain that and dedication of our amazing community should be avoided during treatment to that this investment has been made Professor Kennedy is working to improve minimise long-term effects and improve possible. By coming together, we can the communication between children with quality of life. defeat brain tumours. brain tumours, parents and their doctors via an online reporting system. Further information on all of our new research initiatives can be found at He believes that quality of life and mental 500 miles in memory thebraintumourcharity.org/new-research health suffer if children aren’t monitored closely straight after diagnosis. He is A huge thank you to our trustees Andy Foote Did you know championing the importance of discussing and Tim Burchell, and their friends Mark Roberts general well-being, as well as the side and Steve Verrall, for raising over £52,000 by Brain tumours are the biggest effects of the tumour, during routine completing the world-renowned 500-mile cancer killer of people under 40, follow-up appointments to reduce these Camino de Santiago walk across northern Spain. yet less than 2% of all funding issues. into cancer research in the UK Andy’s son Joseph was diagnosed with a brain is invested in brain tumours. tumour at the age of two. Despite multiple Your donations, including Gifts operations and a worldwide search for effective in Wills, are helping to change this. treatments, he died in 2007 aged nine. 4 The Grey Matters Issue 13 The Grey Matters Issue 13 5 tumour labs across the world focussing on this – even now, three years after our work started. By questioning the basic See inside our labs processes by which things happen, we can Wondering what day-to-day life looks hope to make fundamental changes in our like inside our labs? You can learn understanding of brain tumours that will more about Dr Tennant’s research and lead to a better chance of our findings the other initiatives we’re funding by eventually leading to a cure. watching our new series of lab videos. See behind the scenes and hear from How has funding from The Brain the lead researchers on what their Tumour Charity helped? work is aiming to achieve at This research would never have got off the bit.ly/InsideOurLabs Update from ground without funding from The Charity. By taking a risk on a pioneering project such the Tennant lab as ours, The Charity has enabled us to make vital discoveries which could lead to more SGC update It’s almost three years since we successful treatments for those affected. started funding Dr Daniel Tennant In the last issue of The Grey Matters at the University of Birmingham. we introduced you to Dr Wen What progress has been Dr Tennant and his team have been Hwa Lee from from The Structural made so far? investigating a new approach to Genomics Consortium (SGC) at the treating adult gliomas spanning low We’ve made some very interesting University of Oxford. As part of this and high grade. We caught up with discoveries over the last three years. We’ve pioneering partnership, which will him to hear about their progress. found unusual ways in which mitochondria help us pave the way for the future evolve and have linked this directly to a of research into brain tumours, we’re change in response to therapy. This means funding two research posts at the SGC Please tell us a little that it could be possible to tell whether or to explore brain tumour development. about your research not a patient would respond to a particular therapy or treatment, depending on how We’re pleased to announce that we’ve In some cases tumours can develop because their mitochondria have evolved. now filled these posts and our new the energy producers in cells (known researchers will start work later this as mitochondria) become dysfunctional. You’re nearing the end of our funding, autumn. We’ve been investigating how and why what’s next for you? To learn more about the partnership, mitochondria change in the first place, We’ll be fine-tuning the pathway between which we’re one of just a handful and hope to use this information to develop dysfunctional mitochondria and therapy of charities to be involved in, new therapies to target them. resistance over the next couple of months, watch our SGC animation at What’s unique about your research? which will bring this stage of our project thebraintumourcharity.org/SGC to an end. The next step is to ensure this is Studying the role of mitochondria in brain incorporated into clinical decision-making. tumour development is a really new area of investigation. There are very few brain 6 The Grey Matters Issue 13 The Grey Matters Issue 13 7 By building global collaborations between researchers and involving those who’ve been personally affected – our ‘experts by experience’ – in their discussions, we Where can accelerate progress and get closer to finding a cure. we’ve been Here’s where we’ve been to help us achieve this: National International British Neuro- Paediatric Symposium Oncology Information Day on Pediatric Society annual Image: Our founders Neil 11 June Neuro-Oncology conference and Angela Dickson on our charity stand at ISPNO.