Believe Spring 2017 by Brain Tumour Research

Issue 008 – Spring 2017

The news magazine for brain tumour activists

BRAIN UK –

the first national virtual tissue bank

Task and Finish Group:

addressing historic underfunding

Get On Yer Bike

for Brain Tumour Research!

Read more inspirational stories inside www.braintumourresearch.org Tel: 01908 867200 | info@braintumourresearch.org

COVER STORY

CRAFT-TASTIC! supports Wear A Hat Day nationwide

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Contents 4 Game-changing support for our pioneering research An appeal from our Chief Executive 6 Latest News... from our Fundraising Groups and Member Charities 8 Craft-tastic! Hobbycraft supports Wear A Hat Day nationwide 10 Famous faces asking you to take part in Wear A Hat Day 12 Wear A Hat Day 2017: Bigger, better, hattier! 14 Meet our Trustees 16 Research updates Our second annual research workshop BRAIN UK – the first national virtual tissue bank

20 Charity of the Year Partnerships 2016/17

32 Updates from our Member Charities

22 Task and Finish Group: addressing historic underfunding

34 Leaving a Gift of Hope Help our work live on

24 Incredible teams and individuals funding the fight!

35 In Our Hearts

28 Let’s Conquer it Together: Challenges and events 30 On Yer Bike for Brain Tumour Research

Together we will find a cure

Unravelling the complexities of Glioblastoma to get closer to a cure

Cover story

8 Craft-tastic!

Hobbycraft supports Wear A Hat Day nationwide

COVER HIGHLIGHTS 17 BRAIN UK – the first

national virtual tissue bank

22 Task and Finish Group:

addressing historic underfunding

30 On Yer Bike for

Brain Tumour Research

Written and edited by: Natasha Pile, Crispin Zeeman & Sue Farrington Smith at Brain Tumour Research, Suite 3, Shenley Pavilions, Chalkdell Drive, Shenley Wood, Milton Keynes MK5 6LB. Printed by: BCQ, 1 Osier Way, Swan Business Park, Buckingham, Buckinghamshire MK18 1TB www.bcqgroup.com Designed by: Clearthinking Creative, 51 Church Street, Hungerford, West Berkshire RG17 0JH www.clearthinkingcreative.co.uk www.braintumourresearch.org Spring 2017

GAME-CHANGING SUPPORT FOR OUR PIONEERING RESEARCH An appeal from our Chief Executive Since the launch of Brain Tumour Research in 2009, we have focused on one thing and one thing only – finding a cure for brain tumours. To do this, we realised we needed to establish a network of flourishing brain tumour research Centres of Excellence throughout the UK, which together would help put this country at the forefront of international brain tumour research. We are partnering with key institutions and organisations to develop and build outstanding teams of scientists and clinicians at these centres, with strategic plans to fill research gaps and explore new

research avenues in order to find the key breakthroughs so desperately needed. With secure long-term funding covering the key salaried senior positions, our researchers can plan long-term research programmes and attract additional grant funding from other sources and build up the number of researchers within the centres. Key training and collaboration opportunities will allow them to develop to fulfil their potential within neuro-oncology, encouraging cross-pollination of the very best thinking at the cutting-edge of brain tumour research, rather than being pulled into other areas of cancer research which currently attracts greater funding and job security.

Changing the game, establishing the priorities From the start, we have focused our activities around five key areas and, in just seven years, we’ve achieved remarkable progress thanks to your support.

1. Influencing change:

In collaboration with our Member Charities and other partners, we have campaigned with one voice at Westminster and now have the support of over 100 MPs with an interest in this area. Our game-changing manifesto call to increase the national spend on brain tumour research to £30 - £35 million in line with other cancers led to the Realf family’s e-petition and the Petitions Committee inquiry. This was followed up by a groundbreaking report and a packed Westminster Hall debate, where an unprecedented number of attendees heard the Government minister concede that more must be done, resulting in the establishment of a Department of Health Task and Finish Group with us playing a key role.

Spring 2017 www.braintumourresearch.org

2. Raising Awareness: We have

engaged an impressive list of celebrity ambassadors, attained an inspirational volume of media coverage, and we have widened our reach hugely on social media. Please continue to follow, like, comment, share and retweet so that we can spread the word even more.

3. Embracing our Community: We couldn’t be this effective without you and your fundraising support. Providing you with what you need to take part in a challenge, organise an event, distribute collection boxes or simply donate is a high priority for us and we strive to deliver outstanding service to you every time. We love receiving your letters, emails and messages, yet we are very aware of your reasons for contacting and supporting us, and our thoughts are always with you.

4. Finding a Cure: Our intelligent, objective and pioneering research approach has identified three clear paths to finding a cure:

Building research capacity and developing a ‘critical mass’ of researchers in sustainable brain tumour research, hence our UK Centres of Excellence strategy. We have established four such centres which are now attracting substantial levels of support from other funding partners. Tissue banking innovation and increasing the availability of brain tumour tissue samples for researchers. We are proud to be collaborating with brainstrust in co-funding BRAIN UK to help improve access to these samples, in order to better facilitate research into brain tumours nationwide. Developing better drugs and treatments to finally destroy this devastating disease. Our researchers are testing new chemical compounds as well as examining the potential to repurpose existing drugs. By fostering greater investment in research and collaboration between our scientists and clinicians, we will champion the development of novel therapies to treat brain tumours and bring us closer to a cure.

5. Funding the fight: We are

calling on the Government and larger cancer charities to invest more in brain tumour research. But we also need the general public and organisations to get behind our cause. Indeed, people and organisations across the UK are waking up to the need to support research into this devastating disease which historically has been so woefully underfunded. Momentum is building faster than at any time before; research infrastructures are being put in place and new discoveries are being made. There is more hope. I am humbled to have been made an MBE in the 2017 New Year Honours list, in recognition of the 15 years I have dedicated to this cause. However, the fight continues and I will not stop until a cure is found. Please stay with us on this journey and continue to donate, fundraise, volunteer, campaign, share your stories, spread the word and support our vital work.

THANK YOU. TOGETHER WE WILL FIND A CURE.

Sue Farrington Smith MBE

www.braintumourresearch.org Spring 2017

FUNDRAISING GROUPS AND MEMBER CHARITIES

Fundraising Group updates

The Darel Bryan Foundation Cat In A Hat

The fearless family behind our wonderful Fundraising Group Cat In A Hat, have been taking to the skies again – this time with three generations jumping from a plane in support of Brain Tumour Research!

Cat In A Hat was established by Cat Anderson’s father Rab, following her diagnosis in August 2014. The group and their supporters have taken on a number of challenges since then, including a previous skydive – raising thousands for vital research. In September last year Cat, her father Rab, grandmother Cathy and five family friends took their fundraising to new heights as they took part in a skydive over Sibson Airfield, Peterborough.

Charlie Charges On

The team behind Fundraising Group Charlie Charges On have been hard at work raising funds and awareness for Brain Tumour Research since it was established in 2014, in memory of seven-year-old Charlie. The group’s recent event, a Vegas-themed Black Tie Ball, took place in October 2016 at the Village Hotel in Elstree and was a sparkling success! A year of planning paid off as guests enjoyed an evening of themed entertainment, dancing and food. 6

Spring 2017

Despite her nerves, Cat enjoyed the experience: “In the past the thought of throwing myself from a plane made me weak at the knees, but after my dad managed to brave it last year, I thought what the hell, why not? Added to that, I didn’t want to show myself up in front of Granny Anderson! I absolutely loved every minute of the whole experience and would definitely do it again.” The high-flying fundraisers raised a spectacular £3,500 and their story was featured in the Northamptonshire Telegraph. CAT-TASTIC.

Karen, Charlie’s mother, reflected: “We couldn’t have achieved this without such amazing support. Big shout out to our amazing sponsors, everyone who donated raffle prizes and all the wonderful people who came and supported the event. We can’t charge Charlie on without you all and we appreciate it more than you know.” This awesome team effort raised over £8,500 – equivalent to three days of research at one of our UK Centres of Excellence!

www.braintumourresearch.org

www.charliechargeson.com

Natalie Overs established The Darel Bryan Foundation in early 2016 after the tragic loss of her beloved partner of 12 years, Darel, to a glioblastoma multiforme (GBM). The group has been determined from the outset, setting an inspiring fundraising target and taking full advantage of any awareness raising activities that they can. Natalie threw her energy behind the new Brain Tumour Research Report on National Research Funding in October 2016. She was interviewed on BBC Radio 5 Live and spoke eloquently about her devastating loss and how she plans to work with Brain Tumour Research to change outcomes for future brain tumour patients. In addition, in September 2016, Darel’s colleagues at Affinity Sutton organised and took part in a fundraising football tournament! Thank you to all involved in helping to raise a fantastic £982. Search ‘The Darel Bryan Foundation’ on Facebook and ‘like’ their page to keep upto-date with the group’s latest news.

Special Welcomes

Together we will find a cure THE

Sue’s strong faith in God and her unwavering positivity allowed her to go on one last holiday with her beloved husband, David, and spend quality time with their three children, Holly, Rachael and David.

The Song for Sue Foundation

We are very pleased to introduce The Song for Sue Foundation as the latest addition to our incredible family of Fundraising Groups. Sue Thomas was a fit, healthy and happy woman when she was first diagnosed with a low-grade astrocytoma in 2013. The tumour was immediately pronounced untreatable and

In Sue’s Name

incurable. However, Sue and her family were told that it was slow growing and they should continue to live life to the full. Tragically in June 2014, following a biopsy, it was confirmed that her tumour had grown into a grade IV glioblastoma multiforme (GBM). Sue endured two cycles of chemotherapy and a trial of Avastin but, despite the treatments, she began to deteriorate daily.

We are also delighted to welcome our newest Member Charity, In Sue’s Name, to our growing family of supporters across the UK.

Sue tragically lost her battle on 1st December 2015.

song for sue

FOUNDATION IN PARTNERSHIP WITH BRAIN TUMOUR RESEARCH

In Summer 2016, the family had the idea of setting up a Fundraising Group in Sue’s memory and so Song for Sue was established. David said: “It is a horrible disease and we really need more awareness to drive far greater funds towards research... If Song for Sue can play a part in finding the cure, then what a legacy this will be for such an inspirational and loving woman, who served God, her family and her friends until her dying day.” The money raised at Song for Sue’s first event, a dinner dance, was sponsored by Reed Employment and raised enough for four days of research into GBM at our Centre of Excellence within Imperial College, London.

www.justgiving.com/SongForSue

the ‘Race for Life’ for Cancer Research UK (her fifth time taking part); six months later she passed away.

In addition, three young people from their parish in North London were suffering from a brain tumour at the same time as Sue; Anthony In Sue’s Name was set up by the parents of Susan Blasotta, after Kathleen Bourke, who was in the next room to Sue in hospital also died in 2011 and Jackie McGovern died two years later. Two other parishioners died and David Taylor lost their 42-year-old daughter on 8th January 2011. Susan was mum to Daniel and Sasha, who were 10 and 12 respectively some years earlier. when their mother died, just six weeks after diagnosis with an aggressive Susan had a deep faith, as did her parents. Soon after she died, a young glioblastoma brain tumour. priest asked David if he was angry with God, to which he explained that he had a great bond with his daughter because of their shared love of God David had a secondary motivation in establishing the group due to the and he saw it as a blessing that he had his lovely girl for 42 years and still family’s local community having been more widely affected by this had her lovely children. devastating disease. Sue had even fundraised in support In Sue’s Name, whose mission is to raise funds for of a friend whose research into brain tumours, has a target to raise mother had died of £1million in 10 years (by 2027). a brain tumour, prior Their initial investment of over £16,000 will see the charity sponsoring six to her own diagnosis. days of research at our Centre of Excellence within Queen Mary University In June 2010, Sue led of London. www.insuesname.org a large team running www.braintumourresearch.org Spring 2017

supporting

www.wearahatday.org 8

Spring 2017 www.braintumourresearch.org

We are extremely excited to announce that Hobbycraft stores nationwide will be taking part in Wear A Hat Day 2017, throughout February and March! There are so many ways you can join in with Wear A Hat Day at your local Hobbycraft store. It’s never been easier to get involved and have a great time fundraising for Brain Tumour Research!

Make it Buy it

Hobbycraft has created a very special fascinator in homage to our iconic pink topper – we love the fun design and hope you do too! These can be purchased instore for just £2 – with 50p from each sale coming straight to Brain Tumour Research. Stores will also be selling our colourful and collectable Wear A Hat Day pin badges – look out for them at till points and grab yours while stocks last!

Create your own hatty masterpiece by taking part in Hobbycraft’s fantastic hat-decorating workshops and competitions. What better place to find all the materials you need to let your imagination run wild... from brilliant bonnets to terrific top hats, anything’s possible with the products available in store and online! Stephen Jones OBE, world-renowned milliner – creator of our 2016 Limited Edition Wear A Hat Day brooch – is proud to endorse the partnership between Hobbycraft and Brain Tumour Research and has been delighted to fashion his own creations from Hobbycraft materials! Why not have a go at replicating Stephen’s hats using his shopping lists and easy step-by-step instructions? www.braintumourresearch.org/hobbycraft

Wear it

Hobbycraft employees will be taking part in a special Wear A Hat Day weekend between 31st March2nd April. As well as organising your own event, why not visit your local Hobbycraft in your chosen hat – you’ll be in good company! Let everyone know why you’re taking part and you’ll be helping raise even more vital funds and awareness for Brain Tumour Research.

The Inspiration

Hobbycraft chose to support Brain Tumour Research after one of their suppliers was personally affected by this devastating disease. Deepa Jivan lost her beloved father Mahendra in February 2014, following a six-month battle with the disease. Mahendra Mehta was a fit and healthy father of three, a charitable ambassador and a successful business man. His diagnosis of an anaplastic astrocytoma grade III, came as a complete shock to his family but they were hopeful that, as the tumour wasn’t grade IV, Mahendra might survive. Indeed, 18 years previously he had endured treatment for prostate cancer and recovered. Tragically, Mahendra slowly deteriorated before being hospitalised in January 2014.

His family were able to celebrate his birthday Deepa said: “I’m so grateful to Hobbycraft with him on 16th February but he slipped into that we can make this difference together. a coma the day after and died a week later. It’s incredible that the work I love so much could actually help others. This is for Papa, Deepa and her family are now determined and our close family and friends who to do all they can to continue their father’s we have lost to brain tumours recently. significant charitable work by helping to There has to be something positive out of find a cure for the devastating disease that something negative. I miss my papa, my took him. They have already raised £8,000 best friend.” by selling memorial t-shirts at his funeral and hope to raise many thousands more by Visit www.hobbycraft.co.uk connecting the charity with Hobbycraft. to find your nearest store and to shop for #HATTASTIC supplies! www.braintumourresearch.org Spring 2017

WEAR A HAT DAY 2017

singer, songwriter and Actor and author Sheila Hancock CBE Meet the famous faces Million-selling record producer John Newman has twice has been a patron of Member Charity diagnosed with a brain tumour and Ali’s Dream for over a decade and is asking you to take part been has supported Brain Tumour Research a great supporter of Brain Tumour and Wear A Hat Day since 2014. In Research. Her grandson, Jack, was in Wear A Hat Day September last year, we invited John to diagnosed with a brain tumour in 1999. join us for a special tour of Lock & Co this was low-grade and was st on 31 March 2017! Hatters in London (long-term partner for Thankfully, able to be removed without incident. Each year we are humbled by the people who offer to don our iconic pink topper and get behind the UK’s premier brain tumour research fundraising event. Whether they have a personal connection to someone with a brain tumour or simply want to champion our cause, we are thankful to them all for their dedicated and tireless support. Celebrities backing Wear A Hat Day 2017 include John Newman, Sheila Hancock CBE, Ed Balls, Linda Robson, Sarah Beeny, Dr Dawn Harper, Jaqui Oatley MBE, and Garry Christian!

Wear A Hat Day, including creation of our iconic pink top hat). John learnt about the history of the world’s oldest hatters and enjoyed trying on a plethora of hats – and we were there to capture the moment! Our biggest thanks to John for his enthusiastic support – Hattastic! John tweeted to his fans: “My new favourite shop in London, such great history, so incredible, thankyou @lockhatters”

Spring 2017 www.braintumourresearch.org

However, Sheila and her family were all too aware of how lucky they were, given the poor survival rates for brain tumour patients. Sheila often attends our lobbying events at Westminster and is a passionate spokesperson for us: “Jack is now an accomplished young man and together we want to help raise awareness. My family always show their support for Wear A Hat Day – we hope to see lots of you doing the same!”

We continue to be humbled by Sheila’s dedication to our cause, a huge thank you to her and her wonderful family.

S E I T I R B CELE R U O Y R CALL FO . . . T R O P P U S

Look out for some of these famous faces featured in posters on the London Underground and across the National Rail network during February and March. This will be our largest ever advertising campaign and we hope to smash our fundraising targets, bringing us closer to establishing our fifth Centre of Excellence!

www.braintumourresearch.org Spring 2017

WEAR A HAT DAY 2017

FRIDAY

JOIN IN

31ST MARCH #Hattastic

Register NOW for Wear A Hat Day 2017 and we’ll send you a HATTASTIC fundraising pack with everything you need to plan, promote and fundraise for your successful Wear A Hat Day event. This year is set to be the biggest, boldest and HATTIEST yet! 2

www.wearahatday.org 1 Your fundraising gets better with merchandise!

We have a vibrant and varied range of merchandise available for Wear A Hat Day 2017. This includes a stylish new Limited Edition Designer Brooch1, ever-popular wristbands2, new-improved baseball caps3, perfect plush hats4, colourful new designs added to our collectable pin badges range5, super-cool car hats6, and awesomely 6 fun photo booth kits!7

Tips to maximise your fundraising: 3

Check out our Hatters Workshop online for more info: www.braintumourresearch.org/hattersworkshop Spring 2017 www.braintumourresearch.org

LET’S GET EVEN MORE PEOPLE INVOLVED!

1. Create a JustGiving Page – Set a fundraising target and aim to beat it! 2. Text to donate and tell others to do thesame, it’s really quick and easy: Text HAT to 70660 to donate £5* 3. Use social media to spread the word and share your #hattastic photos! 4. Tell your story – easy-to-use press release templates are available to download from our website. Enter this unique, short URL goo.gl/yexGYy into your web browser and jump straight to the downloadable PR templates. *Texts cost £5 plus network charge. Brain Tumour Research receives 100% of your donation. Obtain the bill payer’s permission. Call 01908 867200 for any queries. Registered charity numbers 1153487 (England and Wales) SC046840 (Scotland).

TOP 10 WEAR A HAT DAY EVENT IDEAS! Coffee Morning, Ladies Lunch or Afternoon Tea Ask everyone to wear their favourite hat and make a donation – easy! Hat Hoopla Win the prize your hat lands on… Big Hatty Bake Off Get the taste buds going and the donations flowing!

We’d love you to get another five people or organisations to join in Wear A Hat Day: offices, schools, clubs, or even simply a group of friends.

Hat Quiz Download these from our Hatter’s Workshop www.wearahatday.org #HatSelfie Photobooth Our ready-made selfie kits are perfect for your event! Pass the Hat Collect cash donations on the day Hatty Walkabout Every step brings us closer to a cure ‘Create Your Own Hat’ Competition Get those thinking caps on… Famous Hats Film Night Willy Wonka, Indiana Jones, Sherlock Holmes… who will you be? Secret Hat Bring a random hat for a colleague or friend to wear for the day!

TRUSTEE PROFILES

Brain Tumour Research Trustees Our trustees are valued and vital members of our organisation. They have all been impacted by brain tumours in the lives of their families or friends and this is reflected in their unwavering commitment to achieving the ambitious goals of our organisation. It is our pleasure to introduce three of our six incredible trustees. (Our other Trustees will be profiled in the next edition of Believe.)

Wendy Fulcher

Wendy is Chair of Brain Tumour Research. She has been an active member of the brain tumour community since losing her husband John to a grade IV astrocytoma in June 2001. Alongside John’s neurosurgeon Kevin O’Neill, she co-founded our Member Charity, Brain Tumour Research Campaign (BTRC), which has been directly funding research at Imperial College for many years. Wendy was instrumental in helping establish our game-changing relationship with Imperial College and Imperial College Healthcare NHS Trust, which together form our fourth innovative Centre of Excellence partnership. We asked Wendy what she is most proud of so far: “I guess it would be ‘patient power’ – whether it is thanks to the persistence of the few (who then grew to be many), a petition to Parliament, or my knocking on the door of the Department of Health and asking why there was no national data registry for brain tumours that has ultimately led to the establishment of a National Data Registry for all cancers... it all proves that we must never give up fighting!

“At a personal level, I am proud that prior to the start-up of BTRC in 2004, there was no neuro-oncology research whatsoever at Imperial College – some 10 years later, the BTRC group at Imperial College submitted an application that was peer-reviewed by an international panel, to become one of Brain Tumour Research’s Centres of Excellence.

“From small acorns can indeed great oaks grow!”

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– vital leadership and governance Stuart McKay

Stuart explains why he enjoys his position at Brain Tumour Research: “In my day job I audit and advise over 80 charities of various sizes from national household names to smaller local based charities. I am very passionate about the sector and was very keen to become a

Stephen Painter

Stephen recently retired from his work as a community pharmacist, a career that included senior management positions with Boots and Safeway before starting his own pharmacy business in Oxford. Having joined in 2015, he is the newest of our trustees but has already become a key and influential member of the board.

“I was delighted to be asked to become a trustee of Brain Tumour Research. I have worker extensively across the spectrum of the retail industry, from small independent pharmacies to supermarkets. I bring knowledge of organisations and their development, within a scientific background, which happens to be that of the charity too.

A successful chartered accountant, Stuart joined our board of trustees in May 2012. He has witnessed the remarkable growth of Brain Tumour Research, expanding from one Centre of Excellence to four; increasing its capacity as an organisation at a phenomenal rate, evolving from a small start-up to a larger, even more dynamic operation with an impressive national influence.

“When I joined Brain Tumour Research, income was under half a million, since this time I have witnessed the extraordinary growth which has been powered by our strong and loyal supporter base. My priority has been focused on supporting this growth by ensuring the key financial controls of the charity are strong thereby ensuring that we know exactly where the hard-earned donations are spent and that we are able to commit the maximum funds to research grants.

trustee of a growing charity. My sister in-law was diagnosed with a brain tumour when she was 13, her story is one of the rare success stories and she went on to qualify as a doctor, which is extraordinary.

“Being a trustee of Brain Tumour Research is an honour but it comes with some important responsibilities. The future of the charity is incredibly exciting and we are beginning to see the findings of our research being reported, which takes us that next step closer to finding a cure.”

“In the short time that I have been involved with Brain Tumour Research, I have witnessed and supported a key period of consolidation with the move to their new offices and key personnel recruited.

I look forward to seeing the fruits of this materialise over the next few years as the challenging targets are achieved. “In my spare time I am a keen amateur cellist, and am currently preparing a fundraising concert on behalf of the charity to be held in February, for which I’m challenging myself to raise £1,000!” www.braintumourresearch.org Spring 2017 15

RESEARCH UPDATES

Game-changing collaboration

HELP US FUND

sustainable research at our Centres of Excellence

In 28th and 29th September 2016, we held our second annual Research Workshop. Over 30 researchers and Brain Tumour Research team members and trustees gathered to discuss how we can collaborate even more efficiently across our Centres of Excellence to achieve our ultimate vision of finding a cure for brain tumours.

The event was hosted by our Director of Research, Dr Kieran Breen, who facilitated an in-depth discussion about how to fill the “current gaps in brain tumour research”. This highlighted one of the fundamental problems that currently exists – how can we attract and subsequently retain PhD students in this underfunded field of cancer research? Without the training of the next generation of researchers, we won’t be able to build upon the foundations of neuro-oncology within the UK which are based at our research centres. Our centre leads, Professors Silvia Marino, Oliver Hanemann, Geoff Pilkington and neurosurgeon Mr Kevin O’Neill in collaboration with Dr Nel Syed proposed tangible and novel solutions to make 16

progress in the area of brain tumour research. This was especially helpful in the lead up to the first meeting of the Government’s Task and Finish Working Group in October as it helped to identify the key gaps that currently exist within the UK research space (read the full report from this on page 22). On the topic of building the ‘critical mass’ of effective research teams, Geoff said: “The vast majority of PhD students would be happy to continue to carry out research in the area of neuro-oncology. But we need the opportunities – people approach us to work in our labs and we just can’t accommodate them due to a lack of available funding.” The identification of the key barriers to research development led to a lively brainstorming session between the researchers at our

Spring 2017 www.braintumourresearch.org

Centres of Excellence with some novel approaches being proposed which will facilitate the development of further and more effective teamwork between the centres – opportunities which are only made possible by our unique funding strategy. Another key topic of the workshop was how Brain Tumour Research as an organisation can better support the centres in all aspects of their work. We were particularly keen to hear how we could help to alleviate administrative blocks and also how we can share updates from the labs to greater effect. Communicating the research progress with our supporters is one of our key priorities and we will be bringing you the latest research updates here, on our social media feeds, on our blog, in the media, in our e-news bulletins and, of course, on our website.

VIRTUAL REALITY Welcome to BRAIN UK, a pioneering world-first enterprise, a virtual biobank unlocking vital resources for brain tumour research Funding partners: brainstrust, Charlie’s Challenge, Brain Tumour Research, British Neuropathological Society (BNS) and Medical Research Council (MRC).

One of the biggest barriers to finding a cure for brain tumours is the lack of, and difficulty in acquiring, the tissue needed for innovative research. Researchers can often be lost in a maze of lengthy application processes. This not only delays research progress but can also prevent scientists from undertaking studies within the field of neuro-oncological research for which tissue samples are critical for our understanding of brain tumours and identifying targets for new drugs within the tumour cells. Recognising a huge unmet scientific and clinical need for brain tumour tissue, Helen Bulbeck and her team at brainstrust led a partnership of charities and hospitals to establish BRAIN UK in order to help streamline the process of making tumour tissue readily available to researchers. Tucked-away in an unassuming office within the University of Southampton, the BRAIN UK database links 26 neuropathology centres within the UK with ethically-approved access to over 400,000 brain tissue samples which have been obtained primarily following tumour surgery and which are stored by the NHS. These samples are largely unused, simply because there has been no dedicated administrative pathway to make them easily available to researchers. The team at BRAIN UK, which is now part-funded by Brain Tumour Research, have humorously likened themselves to a ‘dating agency’ for researchers; using their centralised database, they are able to quickly and efficiently match samples to requests for research studies.

Together we will find a cure

Since opening their resource to brain tumour studies in 2014, BRAIN UK has successfully supported 26 applications for tissue samples. Clare Mitchell from BRAIN UK has been encouraged by the enthusiastic response from the scientific community: “When I meet researchers, I can see the cogs turning in their mind with the opportunities that are being made available through BRAIN UK. They can begin to consider studies which would have been too difficult to achieve on their own; ones which require multiple rare samples, for instance.”

BRAIN UK is supported by a small but dedicated committee of neuroscience experts who advise on each application before submittal. They helpfully offer modifications and improvements to studies to ensure best practice and achieve the most reliable results. In 2015, BRAIN UK again partnered with our member charity brainstrust to create the Brain Tumour Tissue Campaign. A national survey in 2014 revealed that only 30% of brain tumour patients were offered the chance to donate their

brain tumour tissue – despite indications from a brainstrust led poll that over 90% would be happy to do so. BRAIN UK was able to advise on the ethics surrounding the campaign, which was launched in February 2015. Learn more about donating your tissue: brainstrust.org.uk/tissue-donation.php More recently, BRAIN UK has discussed partnering with UK Biobank to embark on a large study which it’s hoped will begin to identify lifestyle factors which may have an impact on brain tumour development. A project such as this would not be possible without access to a large volume of samples.

Brain Tumour Research is proud to support BRAIN UK in collaboration with brainstrust and Charlie’s Challenge, as they continue to offer invaluable resource to researchers in the field of neuroscience. Find out more: southampton.ac.uk/brainuk/index.page

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RESEARCH SPECIAL

UNRAVELLING THE COMPLEXITIES OF GLIOBLASTOMA TO GET CLOSER TO A CURE Dr. Loredana Guglielmi, Postdoctoral Research Fellow at the Blizard Institute in Queen Mary University of London outlines our current understanding of one of the most common and fatal forms of brain tumour.

Fig. 1

Fig. 1 and 2: Human stem cells of neural origin

Spring 2017 www.braintumourresearch.org

Fig. 2

The term ‘glioblastoma’ is nowadays used synonymously with “glioblastoma multiforme”. Back in 1927, Percival Bailey and Harvey Cushing coined the term “multiforme” (multiformis, Latin for multiple forms) to underline the heterogeneity (diversity) of this type of brain tumour. Their analysis was mainly based on histological observations (histology is the study of the microscopic anatomy of cells and tissues of plants and animals), however it paved the way for a better understanding of the complexity of this disease. Modern genetic analyses have confirmed these initial considerations. Yet, it was not until 1953, when the structure of DNA was discovered, that scientists became aware of what genes “are made of” and how genes “operate”, in both normal and pathological conditions. Just 50 years later, the Human Genome Project (HGP) Fig. 3

was completed, giving researchers the possibility to study not just a handful of genes but all of the genes present on the human genome. The whole DNA sequence is now known. Studies like the HGP have become more and more sophisticated and complex. In fact, they allow scientists to investigate the “nature” of genes in depth, unveiling how genes are regulated, how they are expressed and how they interact to make us what we are. This implies we know the sequence of DNA (genetics) and everything “sitting on top of” this sequence (epigenetics). Epigenetics is the reason why a muscle cell looks different to a brain cell and they take on different jobs in the body. Although they share the same DNA, their genes are expressed very differently. Thanks to epigenetic studies, we have identified that glioblastoma is a “multiforme” disease and that it exists in at least six different subgroups which differ in gene expression, age distribution, tumour location and prognosis. The most obvious implication arising from this epigenetic data is that patients could ultimately receive tailored medical treatments. How can we tackle glioblastoma in a subgroup-specific manner? What can we learn about different glioblastoma subtypes to ultimately create patient-specific therapies? The Brain Tumour Research Centre of Excellence at Queen Mary University of London, led by Professor Silvia Marino in partnership

with the Institute of Neurology, University College London, is tackling these questions with a new cutting-edge and challenging experimental approach. As a postdoctoral fellow of the group, I am directly involved in this ambitious project. Now 18 months in, we have made encouraging progress in the setting up of a ‘pipeline’ to generate a comprehensive epigenetic landscape of high-grade glioma tumours, with the aim to increase our knowledge of glioblastoma subgroups as compared to a non-pathological context. We believe that a better understanding of how the various subgroups of glioblastoma differ from each other will help researchers and clinicians to better stratify patients. However, a pure comparison across multiple types of this tumour is possibly not enough to make a cure a reality. The biology of this disease must be examined in all its aspects. To this end, our pioneering work aims to understand differences not only between tumour subgroups but also within each tumour. In this scenario, the approach being taken here at Queen Mary University of London – one of the top 100 universities in the world – is groundbreaking. Being trained as an early career researcher at this Centre of Excellence is a fantastic opportunity to build up my experience in state-of-the-art brain tumour research. The amount of useful data that can potentially be generated from a comprehensive epigenetic study, not just across tumours but within a single specimen, will certainly become the starting point for many other projects. A domino effect that will attract young researchers into the field, expand the research area of brain tumours, produce high-quality results and bring the scientific community closer to a definitive cure.

Fig. 3: Glioblastoma cells

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CHARITY OF THE YEAR PARTNERSHIPS

CHARITY OF THE YEAR SUPPORT

Major UK law firm Shoosmiths was very happy to announce that the Manchester team had chosen Brain Tumour Research as their Charity of the Year for 2016/17. Shoosmiths is committed to delivering on its corporate social responsibility promises and have already been incredibly busy fundraising and raising awareness for our cause. In September last year, a team of four runners from the Manchester office – Leslie Mok, Suzanne Taylor, Jamie Bryan and Alex Peliza – took on the Great North Run and raised over £1,800!

In October 2016, the Shoosmiths team used their office at Old Granada Studios – which has been featured on Reality TV show Most Haunted – as the base for a Halloween-themed cake sale. They also offered eerie ghost tours of their infamous premises! These activities raised over £200. The team didn’t stop there... In November, they went on to complete their own ‘Tour de Shoos’ spinathon! Participants took turns on spin bikes provided by Pure Gym to cycle the equivalent distance between their most northernmost and southernmost offices; from Edinburgh to Southampton. Approximately 678 miles were completed by the team and they raised a spin-tastic £3,034!

The team blogged about their experience: “It was the first time one of us had attempted the distance, so there were some pre-race nerves flying about... it was phenomenal and inspiring to see the sheer number of people, both competitors and supporters, that turned out for the day all in the name of so many great causes. Brain Looking back, the tumours kill money we managed more children to raise for Brain and adults under Tumour Research the age of 40 was fantastic. The than any other guilt-free pints after cancer the race also went down particularly well!” 20

Spring 2017 www.braintumourresearch.org

Our deepest gratitude to Shoosmiths Manchester for their unique and enthusiastic support!

TOGETHER A CURE

In October 2016, Brain Tumour Research was announced as the Luton FC Player’s Charity of the Year! The team were shocked after news came of former Luton Town player Paddy McCourt’s wife Laura being diagnosed with a brain tumour and our cause touched the hearts and minds of the players.

Luton FC is aptly nicknamed ‘the Hatters’ and was pleased to join us for a photo-call on the pitch at Kenilworth Road to announce the partnership. There are many exciting plans afoot for the team to help promote and join in with what we think could be a record-breaking event on Wear A Hat Day 2017 – keep a close eye on our social media feeds on Facebook and Twitter for more #hattastic photos and news of this legendary partnership!

Post-training #SweatySelfies

WE WILL FIND

The players have already helped raise vital funds by taking part in our #SweatySelfie social media campaign (in memory of fitness expert, Nicki Waterman), posing for their own post-training photos and encouraging everyone to text We are honoured to donate on Twitter.

have been chosen by the players at Luton FC and can’t wait to see what the next year has in store!

JOIN IN, DONATE,

help us fund the fight. Together we will find a cure

Members of the Brain Tumour Research team pose with players (L-R) Stephen O’Donnell, Cameron McGeehan and Josh McQuoid.

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CAMPAIGNING

INFLUENCING CHANGE NEW TASK AND FINISH Your support for our campaigning last year saw us achieve outstanding success with our e-petition culminating in a Westminster debate. The Government accepted “that more needs to be done” and the Task and Finish Working Group was established to address the chronic underfunding for brain tumour research.

The Group met for the first time at Richmond House in the heart of Whitehall in October 2016 and will report to the Parliamentary Under Secretary of State for Public Health and Innovation in Summer 2017. Driven by Brain Tumour Research, our member charities and supporters, the group has provided a momentous opportunity to press for a greater research capacity which will ultimately improve outcomes for brain tumour patients and their families. Issues that we have taken the lead in campaigning on for many years have featured prominently in the discussions. Members outlined the primary barriers affecting brain tumour research and how these might be removed. We drew specific attention to issues around a lack of sustainable research, tissue availability and the need for drug development.

MPs – they work for you!

It is important that we all continue to talk to our local MPs to ensure they press the Government to deliver results. We can help you talk to your MP about issues around brain tumour research, how we are influencing change in the funding landscape via the Task and Finish Working Group, and how to convey the essential points of our new groundbreaking National Research Funding Report. If you’d like guidance on communicating with your MP, get in touch with us via email on: campaigning@braintumourresearch.org call us on: 01908 867200 or complete our online form: www.braintumourresearch.org/ register-your-lobbying-interest

Campaign with us

Spring 2017 www.braintumourresearch.org

IN THE GOVERNMENT’S WORKING GROUP Centres of Excellence – a strategic model

We have already established four dedicated research Centres of Excellence and our mission is to build a network of experts in brain tumour research across seven such centres which will sustain our research expertise moving forward. Our ‘centre model’ addresses the need to support long-term, research which will attract additional funding, accelerating the pathway to a cure. We are building a ‘critical mass’ of research team expertise which will attract increasing levels of support from other funders such as larger cancer charities and the Government. Our centres model will create more reliable careers for brain tumour researchers and the prospect of tenure-track positions within our partner universities, both critical to providing life-long leadership and research breakthroughs. We are advocating this model be adopted by other funders. We are also calling on the Government to create a national register of all site-specific cancer research to track all research work, grants and results and prevent duplication.

Tissue banking innovation

Another barrier to research progress is a potential shortage of brain tumour tissue samples available to researchers. These are vital to really understand the basis of tumours. We are proud to collaborate with brainstrust and BRAIN UK to help improve access to samples, in order to better facilitate research into brain tumours.

Read more from our recent visit to BRAIN UK’s headquarters in the University of Southampton ON PAGE 17.

From bench to bedside

The importance of finding better drugs and treatments that finally destroy this devastating disease cannot be overstated. Whether it’s the testing of new chemical compounds or the repurposing of existing drugs which are used to treat other conditions, there are still very few drugs readily available for the treatment of brain tumours, whilst up to 40 drugs exist for breast cancer and leukaemia. Investing in greater research will allow our scientists and clinicians to work together to develop new therapies that, when proven effective in the laboratory, can then form the basis of clinical trials which could ultimately lead to viable new therapies.

Championing e-petitions

Every new e-petition posted to the Government’s website is helping to keep up the pressure and keeps brain tumour research high on the political agenda. Every brain tumour petition counts and we will back each one with you. For support with starting an e-petition please contact our Public Affairs Team campaigning@braintumourresearch.org At time of printing January 2017 there is one live e-petition, calling for the Government to give more funding to brain tumour research. Created by Jessica Campling in support of her brother James who was diagnosed with a grade IV glioblastoma in June 2016. https://petition.parliament.uk/ petitions/169667 We urge you to please sign this petition and ask everyone you know to do the same. If we can help Jessica reach her first target 10,000 signatures, the Government will issue a response. www.braintumourresearch.org Spring 2017 23

FUNDRAISER STORIES

GOING THE EXTRA Training in rocky desert Dubai

Rochelle Bell Completing a full marathon is, for most, a monumental achievement. However for passionate runner Rochelle Bell, this is a mere warm-up for her next adventure. Rochelle, who volunteers at the The Mulberry Centre cancer support charity, was inspired by a patient she met following their brain tumour diagnosis in 2015. They discovered a shared enthusiasm for running and a generally positive attitude to life, with Rochelle embracing fitness challenges on behalf of her friend.

Training in red desert, Dubai 2016

Raising money for Brain Tumour Research and The Mulberry Centre, Rochelle has committed to running four ultra-marathons during 2016/2017! The challenge kicked-off with the Race to the Stones (100km) in July 2016, then the Atlantic Coast Challenge (125km) in October. The final two challenges are desert trails. This year, Rochelle will run the Hajar 100 in Dubai followed by the Marathon des Sables, described as “the toughest footrace on Earth” – 156 miles across the Sahara in six days!

“My family think I’m a little nuts when I tell them about the ‘adventures’ I’m signing up for but, after the initial eye-rolling, they tend to say ‘that’s cool’. I would love to be able to run and make a difference to brain tumour patients. I may not do so many marathons in twelve months again, but there is one in Iceland, and another in South America, that I wouldn’t mind doing. I’m not stopping now!” Donate to Rochelle’s fundraising page: bit.ly/rochellebell Atlantic Coast Challenge 2016

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MILE

Run for us

Dylan and Heidi Jones Dylan and Heidi’s beloved “Pops”, Ian Byland, was diagnosed with a grade IV glioblastoma multiforme (GBM) in July 2016. The siblings were immediately determined to help raise money for research into the disease their Grandad was fighting and started planning a fundraising walk across the Malvern Hills. Dylan and Heidi wrote on their JustGiving page: “We know the doctors are doing lots of hard work and will give Pops lots of treatment to help fight the cancer he has but that he will always live with his tumour. We want to support him by raising money to help him and other people as our mummy has told us anyone could get a brain tumour.”

In September 2016, the duo completed their 10-mile walk in just four and a half hours and smashed their initial £200 fundraising target, raising an awesome £1,200 – WHAT AN AMAZING TEAM!

JOIN IN, DONATE,

help us fund the fight. Together we will find a cure

Mini Great North Run

The Mini Great North Run takes place every year alongside the main race in Gateshead, Newcastle. In 2016, a group of three friends completed the race in memory of a dearly missed Uncle. Evie, Emily and Holly decided to take part in the four-kilometre race to raise vital funds for Brain Tumour Research, following the loss of Emily’s Uncle Paul.

They set a £100 target on their JustGiving page but soon passed that, raising £177 thanks to an outpouring of support from family and friends. WELL DONE GIRLS!

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FUNDRAISER STORIES Brain tumours kill more children and adults under the age of 40 than any other cancer

Incredible Team Work: CELTIC CROSSING

The Celtic Crossing is a 34-mile open ocean rowing challenge between the Scilly Isles and mainland Cornwall. In September 2016, Lee and Andy Relf completed the race in proud support of their sister and daughter, Gemma Edgar. Gemma, 31, was diagnosed with an incurable brain tumour in 2014 while pregnant with her second son, Noah. She has since been an incredible supporter of Brain Tumour Research, joining us in our quest to help secure increased research funding for brain tumours. Lee and Andy struggled to hold a compass bearing during the race; almost collided with a container ship and capsized twice. Needless to say, after six hours and 23 minutes, the finish line was a welcome sight. Poor weather conditions on the morning of the race forced many to pull out; however, the brave duo could not be dissuaded, driven by generous donations already received by family and friends.

Lee recounts: “We started seeing land when it was about 20 miles away, but we paddled for two hours and it didn’t look any closer. Then the adrenaline kicked in; we thought about the situation Gemma is in, and that powered us home. The organisers said they could not believe the time we did it in. Apparently fewer people have done the crossing than have gone into space. It was the best beer I’ve ever had at the finish.” Although they have pledged never to take part again, Lee and Andy raised an oar-some £9,500 for Brain Tumour Research! 26

BOOBS & BRASS Alan Needham, 65, was diagnosed with a grade 4 glioblastoma multiforme in January 2014 and was told he had just six to 12 months to live. Alan has not only outlived his prognosis but has also greatly inspired his local community; collectively they’ve raised over £20,000 for Brain Tumour Research! A life-long music enthusiast, Alan is well known within the brass band community across South Yorkshire and Lincolnshire and is also a highly respected musical director and conductor. Less than two months after Alan’s surgery in 2014, a group of 48 brass band

Spring 2017 www.braintumourresearch.org

Could you volunteer for us?

musicians from 10 different bands responded to his rally cry for an All-Star Brass Concert in aid of Brain Tumour Research. This event was repeated in 2015 and Thurcroft Welfare Training Band also held a concert in 2014.

TOGETHER WE WILL FIND A CURE On 25th September, Angela Lloyd was joined by over 100 Transport for London (TfL) employees to take on a unique and aweinspiring challenge in memory of her beloved husband and their colleague Steve Lloyd – who passed away from a brain tumour almost a year to the day before.

Much to Alan’s humble delight, the ball keeps on rolling, with more and more local musicians taking up his cause, the latest of which was the ‘Boobs and Brass’ event in 2016. Alan reflected afterwards: “A band made up of over 50 ladies and several men (many of them good friends) filled St Peter’s Church in Doncaster with some incredible sounds. I managed to stay and conduct a couple of numbers before I had to go home to take medication and rest. This was sad because it meant that I missed the presentation of a lovely yellow rose, specially named ‘Alan Needham’ from my banding colleagues. Thankfully, my brother Ray was able to accept the wonderfully thoughtful gift on my behalf, which now has pride of place in my garden.” Our warmest thanks to Alan and the talented musicians who pulled together in support of Brain Tumour Research, you’re truly helping to fund the fight!

ONE N DLLEO LOYCLN E CHA NGE C

12 teams of four pedalling on Santander Cycles covered the distance of the entire 250 miles of the London Underground Network. Each team followed one line and stopped at every station – 270 in all – along the way. A shorter version of this event was first held last year, covering the District Line only, on which Steve had worked for the entirety of his 22-year career. As well as remembering Steve, the aim of the event was to raise funds for vital research and as a sea of pink Brain Tumour Research t-shirts made their way through the sunny autumnal streets of London, the cyclists did a great deal to raise awareness of the disease too.

This incredible team challenge raised over £25,000, equating to over nine days of research funded. At the time of writing, plans were being finalised for the teams to place special commemorative tiles on our Wall of Hope and see first-hand the groundbreaking research being done during special lab tours at our Centre of Excellence in Queen Mary University of London. Our thanks to TfL and Santander for their fantastic support. We’re really excited to learn what the team are lining up for the future!

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LET’S CONQUER IT TOGETHER

In September 2016, over 70 Brain Tumour Research supporters and staff members gathered once again for our annual Grand Union Canal Walk. Fun in the sun was had by all as they walked along the 11-mile route – including the many pet dogs brought along. Lunch and refreshments were enjoyed at the Grove Lock pub, which marks the halfway point.

THE BRAIN TUMOUR RESEARCH

GRAND UNION CANAL WALK 2016

Excitingly, the Three Locks pub (the start and finish point) also extended their support for us this time – they laid on a special menu throughout September and, in partnership with Leighton Buzzard Brewery, introduced a special ale called ‘Hops for Hope’. A percentage of the takings were donated from the meals and the special pints to help support our vital research. Huge thanks to one and all for supporting this great event – over £13,000 raised this time. See you on 30th September next year!

Could you hold a Canal Walk for Brain Tumour Research in your area? If you’d like help setting one up for September 30th 2017, we’d love to hear from you! Contact sarah@braintumourresearch.org

TEAM FIGHTING In October last year, some of our team (and some willing partners and friends) practiced what they preach when they took on FORCE the Rock Solid Race in Milton Keynes! ARE ROCK SOLID! The five-kilometre course encompassed 25 obstacles: The keen ‘Fighting Forcers’ scrambled over logs, crawled under barbed wire and even endured being fully submerged in a muddy pond... Undeterred, they completed the course in just under two hours and, despite spending the next week washing away the mud, they were very happy at having raised over £2,600! Special thanks to Fiona McKay, whose fundraising was matched by her employer, Santander. Team Fighting Force would like to thank all their supporters and donors for helping them to fund the fight in glorious muddy style!

Spring 2017

A N O E K TA E G N E L L CHA . . . 7 1 0 2 IN