The GREY MATTERS Research | Awareness | Support Issue 13 Autumn 2016

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. the Tennant lab By taking a risk on a pioneering project such 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. (ISPNO) 29 June – 1 July We hosted a National 12 – 15 June Paediatric Information Every year, neuro-oncology treatment and effects, to Day in Liverpool this June, Society of researchers and healthcare Where care and education. We’re organised as part of ISPNO. We were the leading professionals from across sponsors of ISPNO in also looking forward to Neuro-Oncology the UK head to the British we’re going As well as hearing from Liverpool this June where sponsoring the EANO conference Neuro-Oncology Society and speaking to doctors, over 1,100 international Here’s where we’re going Nurses Education Day (BNOS) annual conference 17 – 20 November nurses and world-leading academics and clinicians over the next few months as part of our continued to hear about the latest international researchers, came together. to help us to continue drive to support healthcare research breakthroughs. families met others going our collaborative work: professionals. We’ll be attending the through a similar situation. This was a great Society of Neuro-Oncology At this year’s conference While the conference and They also heard about opportunity for us and our (SNO) conference in the in Leeds, Professor Richard Nurses Education Day will the new report from our new Chief Scientific Officer European USA this November to hear Gilbertson, Chair of our be invaluable to all areas of Life with a Brain Tumour David Jenkinson (page 10), Association of about the industry’s newest Scientific Advisory Board, our work, it’ll also allow us project, Losing My Place: to build relationships with research developments and presented alongside Neuro-Oncology to strengthen our ties with The Reality of Childhood world-class researchers, learn about the findings internationally renowned our European colleagues (page discuss our funding conference from the latest clinical trials. with a Brain Tumour keynote speakers. We also opportunities with new and, following the Brexit Experts from across all areas 28) ahead of the launch 12 – 16 October attended scientific update referendum this June (page at ISPNO. To watch videos contacts from across of the brain tumour research sessions and promoted our 15), ensure we remain of the fantastic talks from the globe, promote our field and international brain Life with a Brain Tumour We’re attending the united in the battle against the day, including Mr Mike HeadSmart campaign and tumour charities will come reports to the researchers European Association brain tumours. Taylor and Dr Roger Packer, make valuable connections together to accelerate attending. of Neuro-Oncology visit bit.ly/NPIDVideos with paediatric healthcare progress and move closer professionals. We also (EANO) conference in to finding a cure. launched our new report Germany this October. Losing My Place: The Reality The EANO conference of Childhood with a Brain spans all areas of neuro- Tumour. oncology from diagnosis,

8 The Grey Matters Issue 13 The Grey Matters Issue 13 9 Thanks to our community

It’s thanks to our wide network of supporters that we’re where we are today. We’d like to give a special thank you to:

OSCAR’s Paediatric Brain Some of our Research Team meet with colleagues from Image: OSCAR’s Tumour Charity was set up CRUK to discuss ways to collaborate on future research initiatives. Paediatric in memory of Oscar who sadly Brain Tumour Charity lost his battle, aged nine, to a medulloblastoma in 2014. We were delighted to recently receive a commitment of £125,000 from them to “I lead a small team who regularly visit “Since starting, I’ve met with a number go towards our new research initiative with institutions across the country to tell of international charities, Cancer Professor Louis Chesler at ICR, looking at them about The Charity and our funding Research UK, up-and-coming new drug development for medulloblastoma. opportunities. I believe it’s vital we get pharmaceutical and biotechnology the UK to the forefront of neuro-oncology companies, and have many other research. By encouraging talented collaborations in the pipeline. We’re proud to have been named researchers, from a range of different fields, By establishing groupings between as the Charitable Partner for St Andrews to get involved with research into brain academia and industry I hope to ensure St Andrews Charity Fashion FS2017 tumours, we can hope to achieve this. that research into brain tumours is Show 2017. Our application for a priority for all, and that products the partnership was inspired by “A key part of my job is ensuring we are developed to improve life today Ben and Sarah Pullen, from The Silas implement The Charity’s five year research for those affected. Pullen Fund, and the funding will go towards strategy. Collaboration is a key focus of the our new 3D printing initiative at Heriot Watt Welcome to strategy and is what attracted me to The “We’re at a crucial point in research University, Edinburgh. Brain Tumour Charity in the first place. and rapid progress can only be made our new CSO by coming together to tackle the big “As a volleyball coach in my spare time, questions. It’s a challenging but exciting Thanks to the Stay Strong Stu This June, we were delighted to welcome I know the value of working as a team to time to be getting involved.” Stay campaign for donating £65,000 to our new Chief Scientific Officer (CSO), achieve a common goal. I am impressed Strong us this May. The campaign was set Dr David Jenkinson. David heads up our with how The Charity is championing To find out more about our research Stu up in memory of Stu Ridley from Research Team and will be responsible collaboration to ensure that every penny strategy, visit thebraintumourcharity.org Northumberland who tragically for implementing A Cure Can’t Wait: Our of funding has the biggest possible impact. /a-cure-cant-wait or to meet the lost his battle with a brain tumour Research Strategy. I hope to expand our community with the rest of our senior leadership team, in July 2015. The money will be funding contacts from my previous role at Cancer including our new Director of Services research into high grade brain tumours. “As Chief Scientific Officer, it’s my Research Technology, part of Cancer and Influencing, Emma Tingley, visit responsibility to make sure we fund the Research UK. thebraintumourcharity.org/slt world’s best research.

10 The Grey Matters Issue 13 The Grey Matters Issue 13 11 A united approach “Data in the cancer registry is important because it gives to patient data us an unbiased and accurate 53% view of what is happening with brain tumour care on a national level. We know that there are We’re proud to be working with Cancer Research UK, variations in care across the Macmillan Cancer Support and a variety of other cancer country, but without this data 53% of adult high grade charities to improve the use of patient data. it’s difficult to understand and brain tumours were diagnosed improve this. as an emergency in 2013. “In terms of research, the data provides us with a list of who had what treatment and what the result was – which we can use as the basis for lab research. Most important of all, the data As it stands, patients’ cancer data is We believe that everyone living with helps us make the argument routinely collected during hospital visits a brain tumour has the right to know for more research and funding, and is included in the cancer registry. Data how their data is being used, and that without which things are not in the registry can be used to help improve data collected should be recorded correctly going to improve”. diagnosis, treatment and care for specific to ensure it’s of benefit to the future cancer types. of research. Dr Matthew Williams, Clinical Oncologist at Imperial College We know however that some hospital trusts The cancer registry showed that 53% London, is currently using patient “Through working with The Brain data to investigate glioblastoma. are better at recording data, and making of adult high grade brain tumours were Tumour Charity, I’ve met so many patients aware that their data diagnosed as an emergency in 2013. people affected by this dreadful is being collected, than others. Of those diagnosed, just 28% survived disease. I know that many of the one year – the poorest survival across all other Young Ambassadors had If you’ve been affected by a brain By working with other cancer charities, diagnosis routes for adults with a high grade to wait a very long time to be tumour and want to use your we’re making recommendations to the brain tumour. diagnosed which had a big effect personal experience to shape the Government on how patients can be better on their treatment and outcomes. informed about their data. We’re also looking This evidence has contributed to future of brain tumour research, I would want my data to be used you can join our Research at how we can work with those personally recommendations made in the Achieving to analyse routes to diagnosis so Involvement Network at affected and NHS trusts to ensure that this world-class cancer outcomes: a strategy that in the future, no-one has to thebraintumourcharity.org/RIN vital data is properly recorded. for England 2015-2020 which look to go through what my friends did.” prioritise and improve early diagnosis for people affected. Chandos, one of our Young Ambassadors, was diagnosed with If you’re interested in data collection or any other aspects of our policy a brain tumour at the age of three. work, contact us at thebraintumourcharity.org/policy-get-involved

12 The Grey Matters Issue 13 The Grey Matters Issue 13 13 Defeating Brain Tumours: one year on Held Nurse & It’s been a year since we launched Some of AHP Study Day £10m raised our five-year Defeating Brain Tumours our strategic strategy and we’re proud of all our milestones community has achieved. To find out Committed a further more about our strategy to double to date Losing My Place £4.3m to 10 report published survival and halve the harm of those 2015/16 research projects affected, visit thebraintumourcharity.org/ £ defeatingbraintumours

Launching our patient pathway Campaigning together to drive change

In our Defeating Brain Tumours strategy, to all patients, but we believe should be. We’re excited to be working in coalition Every day we hear stories from people we pledged to improve life today for We hope that by having this information with other charities that represent people affected by a brain tumour that highlight people affected by helping them better patients and families will feel empowered affected by cancers of unmet need, such the issues that matter to them. By uniting navigate the healthcare system. to ask about these opportunities, as oesophageal and pancreatic cancer, to with other charities, we can campaign with influencing how services are improved. identify common issues across diagnosis, a louder voice and drive the vital change We’re pleased to be launching our patient treatment and care. needed to improve life today for those pathway which will help them do just that. People living with a brain tumour can use affected. this guide to feel better informed during Our initial focus is on the England Cancer We know that following a brain tumour their treatment and care, know who and Strategy which was published last year. diagnosis, dealing with the NHS and other what to ask and feel confident when The strategy, which we’re advocates for, After Brexit: continuing agencies can be a new and sometimes discussing options with their medical team. aims to transform cancer services and intimidating experience. We believe to collaborate improve the NHS experience for those everyone affected, regardless of their Our patient pathway will help us reach our affected. We’re proud that it includes On 23 June the UK voted to leave age, postcode or tumour type should have goal of halving the harm that brain tumours recommendations for the NHS to evaluate the EU. We don’t yet know the full access to the best treatment, care and have on quality of life, sooner. the findings of our HeadSmart campaign, extent of the impact this decision information, but are aware this isn’t always as well as to encourage access to a clinical will have on research, treatment and the case. To find out more about the patient nurse specialist (CNS), develop a Cancer care in the long term; however we’re pathway, visit thebraintumourcharity.org/ Patient Experience Survey for under 16s working with other organisations, Through working with nurses, healthcare patient-pathway and improve digital communications. including the Association of Medical professionals and patients, we’ve Research Charities, to establish how developed our patient pathway which We’ve also been invited to participate in the medical research sector should outlines the standards of care we believe Did you know the Cancer Patient Experience Advisory respond to the vote. all adults diagnosed with a brain tumour Less than 3% of brain tumour Group (CPEAG) as a representative of should expect from the NHS. It also For further information, visit patients take part in a clinical rarer cancers. This group, which involves a includes information on investigations, trial, compared to an average number of charities, will lobby NHS England thebraintumourcharity.org/eu-decision clinical trials and research opportunities of 7.5% of patients across all to ensure the recommendations in the that are not currently routinely offered cancer types. England Cancer Strategy are implemented.

14 The Grey Matters Issue 13 The Grey Matters Issue 13 15 My personal Everest

After watching his nephew, Sam, go through gruelling radiotherapy and chemotherapy for his posterior fossa brain tumour, Colin Dorrance embarked on an extreme challenge to raise funds towards finding a cure.

“My nephew Sam, aged five, spent 10 £27,000 for us. “It became a wonderful months from August 2015 to June 2016 example of what can be achieved with in hospital in Edinburgh, 100 miles from the personal touch, online awareness, his home in Stonehaven, Aberdeenshire goodwill and collaboration. Hundreds of receiving treatment. Each day away from people helped in their own way – family, home was a personal Everest for him, friends, colleagues, strangers, businesses, his mum Tanya and his dad, my brother community groups, schools and the police. Graeme. Everybody did so without wanting the recognition that they deserve. “Sam’s parents set up a Supporter Group called ‘Super Sam’s Fund’ for The Charity, “The cycle was a challenge, it pushed me which paved the way for a series of harder than ever. Sam was discharged from fundraising events. During the winter hospital the week before the event and was months of Sam’s treatment, I raised the idea well enough to lead us into Stonehaven of a sponsored bike ride of 200 miles in two in a mini-motorcade of reception vehicles, days from Gretna Green to Stonehaven. I’d which he loved. Sadly, Sam passed away never attempted anything of this magnitude a couple of weeks after the event, making his before, and never for something so close to presence on the day even more cherished. home – a personal Everest. ‘Cycle for Sam’ was born.” “He has a legacy to be proud of – this event, along with the mini events it triggered, have Months of training were required, planning raised over £27,000, five and a half times the route and putting facilities in place to the target.” help achieve the ultimate goal. Colin and his family embarked on a social media campaign Thank you to Colin and all our amazing to involve as many people as possible, in fundraisers who are an inspiration. It’s both Gretna and Stonehaven. through your efforts that we can continue to improve the lives of those affected. This June, Colin and his team of cyclists completed ‘Cycle for Sam’ raising over

16 The Grey Matters Issue 13 The Grey Matters Issue 12 17 It’s beginning Become a Christmas Angel ...everywhere you go to look a lot Give a little extra back this Christmas by like Christmas… becoming a Christmas Angel and selling our cards and gifts to family, friends and colleagues.

Whatever your plans for Christmas, there are many ways you can make #TheBrainyBunch part of your celebrations and reflections this year.

Last Christmas, Christmas cards and gifts Santa fun runs our dedicated community of supporters, volunteers, researchers, Spread Christmas cheer with our Have some festive fun with corporate partners and healthcare new range of cards, wrapping paper #TheBrainyBunch and raise money for professionals came together to help us raise and gifts. Check out our Christmas those affected by taking part in a santa over £57,000 through seasonal sales. That’s catalogue and order all you need in one fun run in December. Sign up today! enough to fund the work of one of our research go from our online shop. fellows in Professor Salomoni’s lab at the Samantha Dickson Brain Cancer Unit, UCL for Seasonal songs at Christmas one year. The team are hoping to discover new To book tickets and find treatments for high grade gliomas through out more about what we’re Join our community as we unite to reflect and rejoice at our annual studying the relationship between doing for Christmas, visit Christmas Carol concert on 7 December at St Giles in the Fields, a cell’s metabolism and the way London and The Parish Church of St Helen Witton with St. Thomas thebraintumourcharity.org/ DNA is packaged. Rudheath, Northwich (venue TBC). Tickets cost £10.00 per person christmas (under 5s free). Book now!

18 The Grey Matters Issue 13 The Grey Matters Issue 13 19 Our Benefits Clinic in action

We welcomed Denise, our Citizens Advice benefits advisor, to the team in April. Denise heads up our new Benefits Clinic and has been providing advice to people like Kay Dallimore:

“My son Connor was diagnosed with a grade 2 – 3 astrocytoma when he was five and has We’re suffered with various disabilities as a result. He’s been on Disability Living Allowance here Enquiries made during the first (DLA) for nearly 12 years. to help two months of the Benefits Clinic (launched at the end of April 2016) “This January, Connor was invited to claim Personal Independence Payment (PIP), but the claim got turned down and we were told Personal independence payment We know that a brain tumour diagnosis can be frightening that other allowances, including his DLA and and can lead to lots of questions. We’re here to help. my carers allowance were being stopped. Employment support allowance

Our Support & Information Service can For families, we work with the whole family “We couldn’t understand why, as our Income support help you to understand every aspect of your following a child’s diagnosis offering one to circumstances hadn’t changed. We tried to Housing benefit journey from diagnosis, tumour types and one support. We also run Family Days which appeal but were constantly given conflicting information. treatment to clinical trials and helping you allow you to meet others going through Disability living allowance live your life – not your disease. similar experiences. “Luckily, our Macmillan worker told us about Working and child tax credits We know that one in two experience If you simply need some information, we The Brain Tumour Charity’s Benefits Clinic. Carers allowance financial difficulty (Losing Myself: The Reality have a number of online factsheets covering “At such an anxious time, it was lovely to of Life with a Brain Tumour). As a result, we’re various topics and we can also translate talk to someone who understood the system Council tax reduction pleased to now offer a weekly telephone these for you. and procedures. Denise told us who we Benefits Clinic every Tuesday afternoon needed to speak to, and after asking for through our Support & Info Line. Support & Info Line a mandatory reconsideration, the decision 0808 800 0004 was overturned. The report also found that 29% of people (free from landlines and mobiles) For advice on navigating living with a brain tumour are severely “Thanks to the Benefits Clinic, I was given the system, money related isolated – as well as our Support & Info [email protected] hope and reassurance that I was doing issues or benefit applications, Line, we also run a variety of online support the right thing and the confidence to keep contact our Benefits Clinic services including Facebook Support Join our communities: fighting on.” (0808 800 0004) open every Groups, regular Twitter Q&A sessions thebraintumourcharity.org/ Tuesday from 12.30 – 4.00pm. and online live discussions. facebooksupportgroups

20 The Grey Matters Issue 13 The Grey Matters Issue 13 21 Continuing to improve best practice With over 99% of the delegates rating the quality of the education at our Nurse & AHP Study Day as good or excellent, we’re pleased to announce we’ll be hosting another one next year. Keep an eye out in future issues of The Grey Matters for more information.

Image: Kate Hayward a Clinical Specialist Occupational Therapist, giving a presentation on Vocational Rehabilitation.

Working with our community: “I really enjoyed this very Nurse & AHP Study Day informative study day. I will be changing my practice because of this.” One delegate said of Dr Jonathan Martin’s This May, we were delighted to hold our first study presentation: “It was the best presentation day for nurses and allied health professionals (AHP) I have been to on the subject, it was very “The various sessions informative and reassuring and it was great working with adults with a brain tumour in the UK. complemented one another in to see a consultant advocating Advanced a useful way. I now feel far more Care Planning which often gets missed The event provided an opportunity for over fatigue, vocational rehabilitation, a carer’s informed and able to deal with in practice.” 160 delegates to hear from experienced, experience, novel treatments, palliative my patients more effectively.” knowledgeable speakers on topics that care and best practice. Events like these are important to ensure are crucial to the care of those affected. Speakers included Zoe Faulkner who that people living with a brain tumour get The programme was developed through spoke touchingly of her experience as her the best possible treatment and standard “A fantastic insight into how the consultation with nurses and allied husband’s carer and Dr Jonathan Martin of care, enabling us to progress further journey impacts patient and carer health professionals on the areas they who discussed the importance of advanced towards our goals of doubling survival quite differently. It highlighted felt their patients would benefit from the care planning in palliative care. and halving the harm of those affected. how small changes to clinician most, including sessions on clinical trials, protocol, in terms of flexibility, can make it easier for the patient and carer.”

22 The Grey Matters Issue 13 The Grey Matters Issue 13 23 HeadSmart news Supporter Groups We’re delighted to announce that the Royal College of General Practitioners (RCGP) has chosen HeadSmart as its Our fantastic Supporter Groups are new clinical spotlight project. The project, which will run until 2017, will help dedicated and courageous groups GPs to identify the signs and symptoms of volunteers who come together of childhood brain tumours. to raise funds and awareness for Dr Rebecca Chellaswamy, who has been Dr Rebecca Chellaswamy said: “The UK The Brain Tumour Charity. appointed by RCGP to lead the project, has already made significant progress will be working closely with us and the in diagnosing brain tumours at an earlier Children’s Brain Tumour Research Centre stage and this project aims to further this. Welcome to our in Nottingham to ensure HeadSmart is new Supporter Groups: brought to the attention of as many GPs “We’re thrilled to be working with the as possible over the next year. By raising HeadSmart campaign to raise awareness Super Sam’s Fund awareness of HeadSmart among healthcare of guidelines and resources that support The Andrea Barcroft Fund not only GPs and other primary care professionals through workshops and The David Whatley Fund Save the date! an online toolkit, we hope that diagnosis professionals, but also the public, in The Michael Barry Fund order to improve clinical outcomes in times for childhood brain tumours can be The Nick Hart Fund Friday 3 March 2017 reduced to under four weeks in line with this relatively rare but important area.” The Ann Jackson Fund NHS targets. The George Grant Superman Fund Look out for more The Duncan McLean Fund details in the next issue Did you know of The Grey Matters Over the last five years, HeadSmart has gained recognition from healthcare To find out more about our Supporter Groups or how professionals around the country and has won a number of prestigious you can set one up, visit thebraintumourcharity.org/ awards. Now, we’re very excited to announce that it’s getting a new look! supportergroups Keep an eye on the website in the coming months: headsmart.org.uk 500 58% 6.7 253 £460k

Over 500 children 58% of children To date diagnosis times We currently have 253 Since April the and young people are diagnosed with a high have reduced from Supporter Groups Supporter Groups diagnosed with a brain grade brain tumour 9.1 to 6.7 weeks since have raised £460,179 tumour every year in are diagnosed as an the public launch for research into the UK emergency of HeadSmart brain tumours

24 The Grey Matters Issue 13 The Grey Matters Issue 13 25 25 Together we can Volunteer focus: Emma Emma was one of 110 volunteers who shape the future helped make The Twilight Walk a success last year.

After being diagnosed with a grade 2 brainstem glioma in 2015, Emma wanted to make a positive contribution to the fight 1% 3% against brain tumours and meet other Leaving just 1% of your Making an appointment Gifts in Wills make up people who understood what she was Will to us could have with a solicitor is cited as just 3% of our annual going through. an impact for future one of the main barriers income – this is less than generations to writing a Will many other charities “I volunteered because I really wanted to help The Charity in any way that I could. Due to the location of my tumour, I sometimes lose feeling in my limbs, so “I decided to leave a gift in my Will to The Brain Tumour Charity after losing volunteering was the perfect way for me my partner to this disease. Enhancements in treatment and surgery enabled to be involved in the walk. Everyone was Simon to have a more fulfilling life and survive his tumour for 20 years.” really accommodating and made sure that I was okay during the day. It was really Bridget Jeffery nice to be surrounded by people who understood. Writing a Will allows you to ensure that Setting up an appointment with The “I enjoyed every bit of the day. The other #TheBrainyBunch your loved ones and the causes that are Goodwill Partnership to go through your volunteers and staff were really kind and important to you are looked after in Will requirements is free. There’s no everyone taking part in the walk was so “I’m not able to change my situation, but by the way you intend. For those who may obligation to go ahead or include us in the friendly and motivated! It was great to talk working together there’s hope that we can have considered writing a Will in the Will and no up-selling of other services. to them and hear their stories too. Knowing change the future.” past but have been put off by the time, we were all there helping do something inconvenience or cost, we’re pleased to It’s the little things in life that can mean the good for a cause that means so much to me Join Emma and be a part of The be launching The Goodwill Partnership most and leaving as little as 1% of your Will was really special.” Twilight Walk this October. You can to The Brain Tumour Charity can have an – a no-obligation home visit Will writing find out more about volunteering impact for generations to come. Together, service for our supporters. Emma was so inspired by her experience here thebraintumourcharity.org/ we can shape the future for those affected. that she’ll be returning to volunteer at The thetwilightwalkvolunteers Will writing services usually cost Twilight Walk in Warwick again this year. For more information visit between £250 and £450, but thanks There are other volunteering opportunities to our collaboration with the Goodwill thebraintumourcharity.org/writing-will “I’m looking forward to volunteering again too. Be a part of our cheer squad and make You can also find a local solicitor by visiting Partnership, a basic Will costs between £95 this year with my boyfriend so that I can some noise to support our runners and and £98 (+VAT). This is a great opportunity solicitors.lawsociety.org.uk show him what it’s like to be a part of cyclists at events throughout the year for our community of supporters to think such a united community that are coming to find out more visit ahead to how they can help our work live together to create something positive. thebraintumourcharity.org/volunteer on far into the future.

26 The Grey Matters Issue 13 The Grey Matters Issue 13 27 Losing My Place: The Reality of Childhood with a Brain Tumour Iceland: This June, we launched the final be part report from our Life with a Brain Tumour project – Losing My Place: of it! The Reality of Childhood with a Brain Tumour.

Losing My Place is based on a survey of almost 300 young people and their parents following a childhood brain tumour diagnosis. It provides a unique insight into the suffering that childhood brain tumours cause for children, young people and their families. Looking for a once in a lifetime challenge for 2017? “Our youngest son was only ten weeks This vital report, which Then why not join The Brainy Bunch in Iceland. old when Dylan was diagnosed so he knows is the most comprehensive no different. But my oldest son, who is six, study of its kind, was only With limited spaces still available, you can When 10 – 14 July 2017 has become more and more withdrawn made possible thanks to be part of our united community on a five because Dylan takes all of our attention. the families who filled out day trek through Iceland’s spectacular Where Reykjavik, Iceland He is suffering at school.” our children and families classic highland landscapes. survey last November. How much £199 registration fee, Jessica Mitchell Thank you for helping By taking part in this incredible trek, £2,100 minimum fundraising target you’ll not only get to challenge yourself (to include flights and accommodation) The report tells stories of courage and perseverance us improve life today for those affected. and spend quality time with other against a disease that often forces children to miss To find out more and register, visit supporters of The Charity, you’ll also be out on so much. It will be used to help us ensure policy To see a copy of our Losing doing something remarkable in the fight thebraintumourcharity.org/challenges makers, healthcare professionals and the public My Place report, visit against brain tumours, raising vital funds understand the realities of living with a brain tumour thebraintumourcharity.org/ because a cure can’t wait. for all ages. losing-my-place The findings will also be used to help us shape our services for children and families in the future.

28 The Grey Matters Issue 13 The Grey Matters Issue 13 29 Updates from Bringing families together We were excited to host our first joint Family Day with The Lewis Moody The Lewis Moody Foundation in Wiltshire this April.

The day was designed for families where parents have been Foundation diagnosed with a brain tumour. The impact of a parent’s diagnosis can be wide reaching and the day allowed families Charity ball to get away from daily worries, spend quality time together and meet others experiencing similar difficulties. The Lewis Moody Foundation annual “The day gave us precious time away from the charity ball took place at The Grange in reminders that I’m living with a brain tumour. London on 5 May, raising over £105,000. It gave my children time to just be children. The The star-studded event brought together funniest moment of the day was Lewis being rugby celebrities including former England rugby tackled to the floor by about 10 children!” captain Chris Robshaw, Radio 1 DJ Greg Marie Wren who is currently living with a brain tumour. James, Olympic medallists Sharron Davies and James Cracknell and England cricketer The next Family Day for The Lewis Moody Foundation will Stuart Broad. be on Saturday 5 November. To find out more about our family days, visit thebraintumourcharity.org/family-days Former British Lions rugby player Martin Bayfield was host for the night with British comedian and freestyle rapper, Heading East for HeadSmart Chris Turner, the Me and Mr Brown band from South Africa and our Young This December, Lewis and a small team of riders will Ambassador and magician Harry, providing cycle 1,000km from Vietnam to Cambodia, as part of entertainment for all. the headeast challenge in partnership with The Yacht Company (Y.CO), with the aim of raising £75,000 for our The ball promoted the incredible work “We’re so proud and HeadSmart campaign. being undertaken by The Foundation and honoured that Lewis raised much-needed awareness of the The headeast team, which includes rugby players Lee Mears Moody was so inspired struggles faced by families when coming and Josh Lewsey and polar adventurer Alan Chambers, by our son Joss, that to terms with a brain tumour diagnosis. are following on from Lewis’ Head North expedition, in the Lewis Moody partnership with Y.CO, which saw him venture through Foundation was born. The money raised from the night will to the Geographic North Pole last year, raising nearly It not only keeps Joss’s go towards funding our Family Days £100,000 for The Foundation along the way. for families of parents living with a brain memory alive but also gives us a focus to help tumour and research into early adult For more on the story behind To sponsor the team and follow their progress, visit other families.” diagnosis, helping us unite families and The Lewis Moody Foundation, bit.ly/HeadEastChallenge improve life today for those affected. visit thelewismoodyfoundation.org Graeme and Tiffany Stark

30 The Grey Matters Issue 13 The Grey Matters Issue 13 31 The Big Match

“The Big Match started in 2012 after On 18 June, over 800 guests united at Two teams of fundraisers and celebrities my dad passed away from a brain the fifth annual The Big Match to raise an battled it out on the pitch to claim the title tumour. I‘d previously supported incredible £57,000 for us and Action for of The Big Match Champions 2016. The Action for Children and wanted Children. Brain Tumour Charity team, which included to create an event where I could footballers Francis Benali and Jimmy continue to support them along with Held at Newbury Town Football Club, the Carter, TOWIE’s Charlie King, Ex on the The Brain Tumour Charity. Dad loved event was organised by supporter Neil Beach’s Nancy-May Turner and Jay James, football and children so we decided Humphries who lost his dad to a brain narrowly missed out on the title during to organise a charity football match. tumour in 2012 following a series of penalties, losing to worthy winners Action misdiagnoses. for Children. We raised £10,000 the first time around so went bigger and better Highlights of the day included a children’s A huge thank you to Neil and everyone the next year with celebs, ex pro training session, a charity football match who attended – including Debbie McGee footballers, a children’s event and and ‘Extra Time’ – a gala dinner which was who sadly lost her husband Paul Daniels to gala dinner, and it’s snowballed hosted by Ampika Pickston from The Real a brain tumour in March – for raising vital from there. The Big Match has so Housewives’ of Cheshire and featured funds and awareness for the two charities! far raised over £240k and we are performances from X Factor’s Jay James all very proud.” and Britain’s Got Talent’s Twist and Pulse. Neil Humphries

32 The Grey Matters Issue 13 The Grey Matters Issue 13 33 Thank you to The Brainy Bunch

We’re forever inspired by your dedication, effort and Joe and his team of Cardiff A team of Knaresborough ladies took part in the Great boys took on the Dragon Knaresborugh Bed Race in memory of two close friends, passion to Ride and raised over raising £1,900 and laughing all the way! raise funds and £2,800 in memory of Sarah awareness Morfoot. for us. Thank you to each and Grant Stephenson from Kilmarnock ran the 10k ‘Roon every one of you the Toon’ with a group of family and friends, he has raised £14,000 so far. – no matter how big or small, you’re helping to make a big difference to those affected Kieran, aged nine, decided Anna, aged nine, from 10 year old Jaye-Jaye chose by a brain he wanted to help others Aberdeen raised over to cut her hair and raised and raise funds for our £2,500 in support of over £1,700 in support of tumour. HeadSmart: be brain a school friend who was family friend Sophie Morris. Join #TheBrainyBunch tumour aware campaign. recently diagnosed with Sophie’s friends and family today: 01252 749043 Stevie Gedge took part in Lynne Broadbent, from He had his head shaved a brain tumour. Anna ran in St Ives have raised an / fundraising@ an open water swim in The Wetherby, completed the at school and raised over the Aberdeen Colour amazing £75,000 to date. thebraintumourcharity.org Solent, ran 10k and will be Cleveland Way raising £500. Run and hosted a coffee taking part in a skydive for £1,500. “My brother has morning with her Mum. The Ali Ling Fund. She has had two pretty horrid raised over £800 so far. brain tumour operations, so what I did was a doddle in comparison.”

34 The Grey Matters Issue 13 The Grey Matters Issue 13 35 Thank you for all you do.

Angela White from Kendal A team of 12 from Measham Medical Unit took part Together we can lost her husband and in the London to Brighton 100km walk in support of several friends to brain colleagues diagnosed with brain tumours. They have defeat brain tumours. tumours. She ran 190 miles raised over £13,000. and cycled 150 miles across the country for us, raising We rely 100% on voluntary donations, more than £6,000 so far. including gifts in Wills. If you know someone who would like to support our work why not give them your copy of this newsletter so that they can see the difference we make.

Or they can make a donation online: thebraintumourcharity.org/donate

Pete and friends cycled 143 miles across the Brecon If you would like more copies please contact us: Beacons in South Wales. Taking on the infamous climbs [email protected] of Black Mountain, Rhigos and Devil’s Elbow in memory 01252 749990 of Pete’s wife Eva, they raised £5,100. For queries about making a donation: The Emma Sim Fund got [email protected] 01252 749043 busy baking and selling Inspired by his son Oliver, cakes in their Soup and who was diagnosed with a Please return your donations to: Sweet fundraiser raising brain tumour at 18 months The Brain Tumour Charity over £1,000. old, Ross cycled from Hartshead House London to Paris in just 24 61-65 Victoria Road hours. Oliver is now doing Farnborough well and is helping fundraise Hampshire GU14 7PA with his brother Thomas.

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