Believe Magazine Summer 2016

Issue 006 – Summer 2016

The news magazine for brain tumour activists

Read inspirational stories inside

COVER STORY

THE FUTURE OF RESEARCH Dr Kieran Breen in discussion with Dr Loredana Guglielmi

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SUMMER FUNDRAISING: Host a good time get together!

www.braintumourresearch.org Tel: 01908 867200 | info@braintumourresearch.org

Over 120 thousand petition signatures!

Government to address successive failures for brain tumour patients

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

Just

Remember Brain Tumour Research in your Will and your gift will leave a legacy of hope.

1%

of the national spend on cancer research has been allocated to this devastating disease

www.braintumourresearch.org/legacy legacy@braintumourresearch.org 01908 867200

Please tell us where you saw this advert when responding

Contents 4 Now is the time for change!

Our Chief Executive reports on landmark campaigning success.

6 United in the fight Cat In A Hat, Glenn McMahon Foundation and Send-A-Message join the fight

26 Research Director of Research Kieran Breen discusses the future of research with Dr Loredana Guglielmi

8 Updates from our phenomenal Fundraising Groups

Updates from our Centres of Together Excellence we will find a cure Equipped for excellence – find out 0 Generous gifts from 1 how your money is being used to Trusts and Foundations fund sustainable research feeding vital research 34 Campaigning 12 Wear A Hat Day 2016 Celebrating the hattiest year by far!

18 On Yer Bike!

Incredible pedal power from our first-ever national spinnathon event 20 Fearless Fundraisers From the Atlantic Ocean to Mt. Kilimanjaro: the incredible challenges raising funds for vital research 24 Summer Fundraising: Host a good time get together!

We celebrate the success of our e-petition in the heart of Westminster!

The brain tumour debate – how your support is changing the future for brain tumour patients MPs Getting Involved

39 Brain Tumour Research making headlines 40 Member Charity Updates 44 Conquer it Together Calendar of Events 2016 46 The big move Brain Tumour Research relocates to Milton Keynes 48 Ways to give 50 In Loving Memory How to set up an online tribute fund 51 In Our Hearts

Campaign with us

Cover stories

36 Over

120,000 petition signatures!

Government to address successive failures for brain tumour patients.

COVER HIGHLIGHTS 26 Director

of Research Kieran Breen discusses the future of research with Dr Loredana Guglielmi

24 Summer

Fundraising: Host a good time get together!

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

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MP after MP after MP spoke on behalf of their constituents who had been affected by a brain tumour. Some even spoke of their own experiences.

Over 70 MPs attended the Westminster Hall debate on research funding for brain tumours; it felt surreal, after 15 years of campaigning at last we were being heard.

Having lost my sister’s little girl Alison Phelan in June 2001, three weeks before her eighth birthday and setting up founding member charity Ali’s Dream with my sister, her family and friends, we were compelled to do something to find a cure so that other families would not have to suffer in the same way.

At conferences run by the then UK Brain Tumour Society I met up with other brain tumour charities and together we knew we couldn’t do it alone; we had to get the Government involved.

In April 2004 my local MP John Bercow, now Speaker of the House of Commons initiated the first ever adjournment debate on brain tumours, following a meeting I requested.

Along with fellow brain tumour charities, we sent a pack of the issues to MPs across the UK and started to enlist support. That October John sponsored a reception and decided that as there was so much interest in the subject he would establish an All Party Parliamentary Group for brain tumours and asked me to provide the secretariat.

We have led campaigning for increased investment for research into brain tumours ever since. We have published three ground breaking statistics reports and in March 2015 launched our Invest In A Cure Manifesto to highlight the issues.

When Maria Lester approached us in August 2015 to support her e-petition we leapt at the opportunity and with the support of our member charities and supporters throughout the UK we quickly went through the first 10,000 signatures milestone.

First ever reception October 2004, John Bercow, Sue’s sister Julie Phelan, Beverley D’Lima & Jack (RIP) and Sue Farrington Smith

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Summer 2016 www.braintumourresearch.org

Our Chief Executive reports on landmark campaigning success This drew the attention of the newly formed House of Commons Petitions Committee and they launched their first ever inquiry into research funding for brain tumours. They advised this would lead to the publishing of their first ever report and a Westminster Hall debate. Comforted by this we were still determined to demonstrate the strength of support across the UK for increased investment and with the support of families who were prepared to share their stories raised awareness through a social media campaign and regional papers, radio and television across the UK.

Sue with the Realf family

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Augu5 st

3 24 28 30 2015st

Augu

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Octob5 er

2015

October

2015

November

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E-PETITION LAUNCHED Over 10,000 signatures – prompted Government response Launch of House of Commons Petitions Committee 1,104 comments received on web forum

Launch of Inquiry – Evidence given by Sue Farrington Smith, the Realf family and representatives from The Brain Tumour Charity, Children with Cancer and Cancer Research UK

2

Nov 015 emb er

17

Evidence given by 15 web forum respondees

By the closing date of the e-petition we had achieved 120k+ signatures – Thank you so much to all involved. The petition committee launched their report and I was proud to sit alongside Maria and present our case.

The date of the debate was announced. We were determined to demonstrate the strength of support. Again we galvanised your support and in your hundreds you acted; writing to and visiting your MPs to share the issues and engage them in our campaign.

Evidence given

by Professor Geoff Pilkington, Professor Garth Cruickshank, Professor Tracy Warr and Karen Kennedy, Director of the National Cancer Research Institute (NCRI)

5 r 201m be Nove

24 201

Decem5 ber

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Over 30,000 signatures reached 016

2 ary Janu

9 3 14 18 201 Feb 6

ruary

100,000 signatures Close of e-petition – 120,129 signatures

016

2 March

16il 20p r A

attended with 30 speaking and 15 intervening.

Even more let us know they wanted to be there but couldn’t because of meetings elsewhere. Our supportive MP database is growing thanks to you.

George Freeman responding on behalf of the Government said it was the most well attended Westminster Hall debate he’d seen.

“I want to pay tribute to the patients and their families and loved ones whose experiences and whose pain drive this campaign and this issue. It is my great Rebecca Harris, Chair of the APPG, sent every MP privilege as the Minister to see that across a letter to encourage them to attend. I wrote to different disease areas, and today in the them highlighting the statistics, our Director of debate, and in your work, you are lifting Research enlisted the support of scientists and a torch and joining a magnificent history clinicians who signed a letter to MPs, highlighting of people who, through their suffering the issues from a researcher’s perspective and our of disease, insist on our doing better and newly appointed Public Affairs Officer, Greg Judge, who drive campaigns and raise awareness, sent them all a briefing. Some of our celebrities leading to increased funding.” and scientists sent a letter to The Times and Sheila This is such a huge move forward in our Hancock wrote to the Huffington Post. campaign and we are indebted to the Petitions We set ourselves a target of involving 50 MPs in Committee for taking up our cause. the debate and were overwhelmed that over 70

Report launched

WESTMINSTER HALL DEBATE We will not stop here – Brain Tumour Research will not stop campaigning to increase the level of funding for research into brain tumours.

At the current rate of national spend it will take 100 years to find a cure. Brain tumour research funding needs to increase to £30-£35 million a year – in line with other cancer research funding.

Now is the time for change!

Now is the time for the Government to listen!

Now is the time for the Government to stop failing brain tumour patients and their families and to put things right!

TOGETHER WE WILL FIND A CURE!

www.braintumourresearch.org Summer 2016

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NEW FUNDRAISING GROUPS & MEMBER CHARITY

United in the fight

The Glenn McMahon Foundation

Cat In A Hat

In August 2014, a CT scan revealed that Cat Anderson, aged 36, had a brain tumour.

A follow-up MRI scan led medics to think that it was benign and that it could be completely removed. However, following surgery and a biopsy, the devastating news came back that the tumour was in fact cancerous, although slow-growing. Cat’s family and friends all rallied round to help and to fundraise, resulting in the setting up of the Fundraising Group – Cat In A Hat! Sponsored head shaves and skydives, arduous assault courses and a family fun day are just a few of the fundraising activities Cat In A Hat have taken on so far, raising thousands for vital research.

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Summer 2016 www.braintumourresearch.org

Cat’s father Rab, who was instrumental in establishing the group, reflected on their success: “We are all doing our bit to make a real difference and hope that more effective treatments and ultimately a cure for brain tumours can be found – and soon. Meanwhile Cat remains positive and upbeat. She says that no-one can really tell when they are going to die – you could be killed in an accident tomorrow. Her mantra is: ‘I don’t feel like dying, so I am just not going to bother.’”

Read Cat’s full story on our website: www.braintumourresearch.org/in-hope-

Husband, son, father and step-father, Glenn McMahon was diagnosed with an aggressive glioblastoma multiforme stage 4 (GBM) brain tumour after experiencing co-ordination problems on the golf course. He married Wendy in February 2014 and, knowing their time together would be cut short, the couple set about making the most of their lives through travel, socialising and their mutual love of fine food. Glenn died in June 2015 at the age of 53 and is hugely missed by all, not least by Wendy: “After losing Glenn, I feel like the centre of my universe has gone. He has left a huge hole not just in my life but for our families too. We are all now on the road of learning to live without him in our lives and it is not an easy journey.

“Launching The Glenn McMahon Foundation has given me immense pride, but it is obviously mixed with immense pain. This time last year Glenn and I were fundraising together, and here I am – fundraising in his memory.

“The two events – Wear a Hat Day at work, followed by the Mad Hatters Tea Party – have raised over £1,250!

Our Fundraising Groups raise money solely for Brain Tumour Research. Member Charities are registered with the relevant charity commission and their objectives may include funding support as well as research.

Send-A-Message

Send-A-Message (SAM) are the latest charity with which we have partnered in the common interest of increasing awareness and helping those affected by brain tumours. Sam O’Callaghan was just five years old when he passed away in 2014, after a brave three-year battle with brain cancer.

Sam’s mother Fiona has supported Brain Tumour Research since Sam’s diagnosis, raising over £4,000 by taking part in the Great Scottish Run with friend Elaine Logan and holding a collection at his funeral. They also held a sell-out charity ball in November 2015 and are already planning for the next in late 2017!

After Sam’s death, Fiona set up Send-AMessage so that she could fulfil her son’s simple wish: “Before Sam passed away his daddy asked him what he would like us to do for other sick children and he simply said: GIVE THEM PRESENTS.” Glenn would have loved the camaraderie – and the cakes!!! So my heartfelt thanks to everyone.”

At the time of writing, the group has raised over £10,000 for Brain Tumour Research and have many exciting events planned for the future, as were Glenn’s wishes. A golf day is due to be held in 2016 at Westerham Golf Club, at which Glenn was Captain. They have also placed a commemorative bench at the 18th hole of the course.

An outpouring of generosity has led to hundreds of pounds of donations to their JustGiving page and Fiona and her family are supported by a dedicated team of seven volunteers/friends that are united and determined to bring smiles to the faces of children currently facing cancer treatment.

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

Read Glenn’s full story on our website: www.braintumourresearch.org/in-our-hearts To find out how our Member Charities might be able to help you, go to www.braintumourresearch.org/member-charities

Together we will find a cure

Could you help? Please get in touch with your local children’s cancer treatment centre and let them know of Sam’s mission. This way the charity can send out gift boxes to the children who need them most.

For further information visit: www.send-a-message.org.uk

www.braintumourresearch.org Summer 2016

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FUNDRAISING GROUPS

Updates from our Charlie Charges On

Karen Carter-Bates and her husband Dean set up Charlie Charges On in 2014, after losing little Charlie five years before. In November 2015, the couple and their three other children, Annabelle, Tristan and Aurora visited our research centre at Queen Mary University of London to tour the labs and to place four tiles on the Wall of Hope in Charlie’s memory. These tiles represent over £10,000 raised for vital research – just a portion of their fundraising total.

Karen reflected on the occasion: “To be able to say that all the support from friends, family, local businesses and Broadfields Primary School has already helped us sponsor eight days of research is incredible.

It won’t bring Charlie back, but it will bring us closer to a cure for brain tumours.”

Charlie Charges On have already hosted a Black-Tie Ball and a Greek Night, as well as taking part in numerous running events in Charlie’s memory.

We’d like to thank all who continue to support Karen and her family, helping to ensure that Charlie leaves a legacy of research to improve outcomes for future brain tumour patients. www.charliechargeson.com

mayors, Tom Wilson, Bob Copland and Brian Hawkes, who all had cancer, and I happened upon Maggie’s Memory through my hairdresser, who knows someone, who knows someone else, who knew someone involved with Maggie’s Memory.”

Maggie’s Memory

The team behind Maggie’s Memory have gone from strength to strength since they first established the group in 2013, so far raising an astonishing £31,000 to date in Maggie’s name.

Numerous fundraisers have been held in the area as part of the Appeal, these included a Vegas Night – with entertainment from a Robbie Williams tribute act and a selfie-booth for guests to take some candid snaps. Also a 3km Santa Walk; open to young and old, participants were encouraged to don a Santa

Testament to their dedication to the cause, Maggie’s Memory were chosen alongside Anker Radio as one of the Mayor of Nuneaton’s Appeal charities for 2015/16!

Mayor Barry Longden announced the two charities at the Town Hall appeal launch in May: “I have chosen the two charities, mainly because of what happened to the three former 8

Summer 2016 www.braintumourresearch.org

suit or at the very least, a festive hat! Nuneaton Cricket Club marked the finish line, where hot food and mulled wine were available in abundance for the tired walkers.

However the team didn’t stop there, organising a whole host of other events including their third annual Summer Fête, a quiz night and a psychic night – all in the past year!

We are continually stunned by the funds and awareness raised in Maggie Davis’ memory and consider it testament to an incredible lady that a whole community has thrown themselves behind the cause with such unity. www.maggiesmemory.co.uk

Fundraising Superheroes!

YOU CAN LEAVE YOUR HAT ON…

Naomi’s Fight for Life Fund

Naomi’s Fight for Life Fund was founded by Lucy Savage after her daughter Naomi was diagnosed with an ependymoma in 2007 at the age of four. Thankfully, Naomi has been in remission since 2008 and a scan in February this year confirmed that she remains cancer free.

This fantastic Fundraising Group have held countless events over the years for Brain Tumour Research, ‘helping to raise thousands of pounds for vital research. These have most recently included a swimathon, car boot sale, coffee

evening and ‘Hope Tree fundraising day’ at The Station in North Yorkshire.

In February this year, they also organised their very own spinathon as part of our latest challenge event: On Yer Bike for Brain Tumours (See page 18 for our full feature on this event)!

Zone Fitness in Northallerton lent their space for the team of dedicated spinners who collectively smashed their target of £2,740 to fund one day of research.

Naomi’s Fight for Life Fund also have a very active Facebook page, which they use to share not only their own updates but also information and posts from Brain Tumour Research. This is absolutely key in helping drive awareness of the devastating statistics and the severe underfunding issues surrounding brain tumour research.

Our warmest thanks to Lucy, Naomi and their fundraisers and supporters in their continued and unwavering support of Brain Tumour Research. www.facebook.com/naomisfightforlifefund

The fearless fundraisers at Head 1st Fundraising Group have produced a very special 2016 calendar for Brain Tumour Research! Organised by founder Nicole Phillips’ friend Lorraine Bateman, a group of gutsy models took part in an almost naked photoshoot in October last year and launched the calendar in November. The calendars flew out of the boxes at the event and are still available to purchase online!

www.head1st.org.uk £10

plus £3.95 p&p

Together we will find a cure

fund a research centre to put an end to brain tumours

www.braintumourresearch.org Summer 2016

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TRUST SUPPORT FEATURE

GENEROUS GIFTS FUNDING LONG-TERM RESEARCH We are the only national charity in the UK dedicated to investing funds into building a network of world class experts in sustainable brain tumour research. We want to increase awareness and understanding of this devastating disease and develop new and innovative treatments to improve outcomes for patients.

Grants already received from Trusts and Foundations demonstrate their recognition of the importance of funding long-term sustainable research at our Centres of Excellence. These generous gifts help us to attract the finest scientists and clinicians to our centres to develop and sustain a ‘critical mass’ of expertise, in turn attracting further investment.

Large grants can create a ‘snowball effect’, rapidly accelerating research projects and discoveries of new methods to treat brain tumours, which could translate into improving measurable outcomes for patients, including higher survival rates, better quality of life and ultimately a cure for the biggest cancer killer of children and adults under the age 40.

What your grants could fund: £10,000 funds our research co-ordinator at the UK Tissue Bank so that researchers can work together efficiently across the UK in order to benefit the patients of the future.

Grants of £15,000 pay the salary of one of our PhD students for a year. These researchers are examining different aspects of tumour cells and the ways in which drugs can be more effective to treat brain tumours.

The daily consumables used by each of our researchers cost about £20,000 per year.

Donations at the £35,000 level fund a Senior Research Associate. They specialise in a particular area of brain tumour research and contribute to experimental design and publications, with much of their time spent working in the laboratory.

Senior Research Associates progress to become Research Fellows and these positions are funded by grants starting at £45,000 per year. At this stage, researchers have gained expertise of the genetic workings of cells. They are able to contribute to grant application submissions and will publish their own papers – the heart of our collaborative ethos.

10 Summer 2016 www.braintumourresearch.org

Grants already making a difference: THE BAILEY WILL TRUST In 2014, Brain Tumour Research applied for a grant from a trust set up by Ken and Doreen Bailey in their Wills. Their trustees recognised our work as the kind that the Baileys would have wanted their legacy to support and contributed a considerable £45,000. This grant allowed us to fund a PhD student in our research centre in the University of Portsmouth for three years, with match-funding from Brain Tumour Research.

One of the chronic issues associated with brain tumours is the extremely limited scope of treatments available. The brain is surrounded by a powerfully protective membrane – referred to as the blood-brain barrier. This barrier is a crucial defence for the brain, guarding this most vital and complex of organs against toxins travelling

in the blood. Many treatments for cancer in the body, such as chemotherapy and cancertargeting drugs, are delivered through the bloodstream and the blood-brain barrier prevents these from crossing into the brain, making it more difficult to combat brain tumours.

Professor Geoff Pilkington at our Portsmouth centre developed a unique all-human version that could be used by researchers in the lab. His model uses only human brain cells, human brain glioma (tumour) cells and human serum.

This blood-brain barrier model is being used by Dr Zaynah Maherally, a Senior Research Associate part-funded by the Bailey Will, to help investigate the cellular and molecular features of invading

Generous grants like this one given by The Bailey Will Trust help us to continue to facilitate innovative and ground-breaking research at our Centres of Excellence.

Together we will find cure

THE HOOVER FOUNDATION As the research taking place in our research centres develops, and as we continue to build collaboration between our expert researchers and their peers all over the world, the opportunity grows for trustees of grant-making bodies to contribute to this vital cause. Many welcome the opportunity to visit our laboratories and see first-hand what their grant is funding and meet the scientists behind the research. Some of our grant funders appreciate having their donation recognised through the placement of unique tiles on our Walls of Hope at our Centres of Excellence, each tile representing the value of £2,740, the cost of one day of research.

tumour cells. Revealing the precise mechanisms of tumour cells’ invasive behaviour is essential to the development of successful new drug therapies for brain tumours.

• Do you work for an organisation that can offer charitable gifts through an associated trust or foundation?

personalised with The Hoover Foundation’s logo as a clear demonstration of their support and commitment.

The Hoover Foundation chose Brain Tumour Research because their ethos is about finding solutions to medical problems that affect a large community. They expect their grants to have a real impact on research, so that they help make a difference and contribute to improving The Hoover Foundation presented a gift of survival rates from such lethal conditions as brain £25,000 to Brain Tumour Research in 2015 the tumours and ultimately finding a cure for such equivalent of an incredible nine days of research. devastating diseases.

Nine tiles were placed on our Wall of Hope, each

• Would you like to fulfil your company’s CSR targets by supporting our world-class research?

Trusts and Foundations Fundraiser, Charlotte Rooke, is here to help. Get in touch today and she will be happy to offer advice and practical help with completing applications or engaging your organisation to give a charitable gift to Brain Tumour Research. charlotte@braintumourresearch.org

www.braintumourresearch.org Summer 2016 11

WEAR A HAT DAY 2016

A HAT-FULL OF THANK YOUS! The support from hatters and milliners across the country is absolutely pivotal to the success of Wear A Hat Day and we are thrilled when more and more take part each year, helping to raise vital funds and awareness for Brain Tumour Research.

We tip our hats to Snooty Frox

Here is our round up of the hattastic activity from Wear A Hat Day 2016!

LOUISE CLAIRE MILLINERY

Louise Claire Millinery in Wallingford held a very special prize draw for this year’s campaign. Prizes were kindly donated by nearby Crooked Billet Restaurant and Stemtation Flowers in Henley.

A bottle of champagne and hat voucher was also donated by Louise Claire Millinery themselves. The draw continued over the weekend following Wear A Hat Day and was a great success – the winners were thrilled with their prizes and they raised a fantastic amount for Brain Tumour Research.

A truly TOP-HAT team!

SNOOTY FROX Ladieswear boutique, Snooty Frox of Harrogate, hosted a special Wear A Hat Day luncheon in support of Brain Tumour Research member charity, The PPR Foundation.

Ladies turned up wearing their best and most glamorous hat in support of the The PPR Foundation’s quest to raise £1m for brain tumour research at St James’s Hospital, Leeds. A selection of hats were modelled by the Snooty Frox stylists, and a two course lunch with a glass of wine was served at The Wild Plum.

The guests also enjoyed a charity raffle – in which among other prizes, a number of designer hats and fascinators were up for grabs, including generous donations from hat suppliers Snoxells, Veni Infantino, Ispirato, Condici, Aoife Harrison, Vivien Sheriff and a Whiteley hat as worn by Kate Middleton. Around £1,500 was raised at this great event!

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Together we will find a cure

CHRISTYS’

Christys’ London have been manufacturing quality hats since 1773 and created many distinctive styles still popular today. Not least the ‘Homburg hat’ favoured by Edward VII Prince of Wales and Sir Winston Churchill.

Limited Edition and Stephen Jones ches Lock & Co Broo n Suggested donatio £10.

The generous hatters offered 10% off all online sales on Wear A Hat Day itself and also donated 10% of all sales to Brain Tumour Research.

Christys’ Lond

on – www.chris

tys-hats.com

HATS OFF to Christys’!

JOIN IN, DONATE,

help us fund the fight.

Together we will find a cure

Up to

40%

of all cancers spread to the brain

STEPHEN JONES MILLINERY AND LOCK & CO HATTERS

On Wear A Hat Day itself, Head of External Affairs Hugh Adams was joined by two of the most prominent names in the hat industry for a day of radio interviews: helping to spread the message far and wide of the need for greater awareness and greater funding for brain tumour research.

Stephen Jones, OBE is one of the UK’s most respected couture milliners. Working in the industry for over 30 years, we were honoured that Stephen chose to apply his artistic talents to the design of our Limited Edition Wear A Hat Day brooch for 2016 and to give his full support to the campaign.

Stephen accompanied Hugh during the morning of Wear A Hat Day, speaking to a number of radio stations across the UK about his involvement and the cause generally, which is one very close to his heart.

Sue Simpson is the Director of Lock & Co Hatters – the world’s oldest hat shop and co-creator of our Limited Edition Wear A Hat Day Brooch 2015. Lock & Co has been a steadfast support to the campaign each year; donating time, money and resource in dedication to helping us get closer to a cure for brain tumours.

Sue joined the interview panel for the second half of the day, delighting listeners with insight and anecdotes from behind the scenes at Lock & Co. When asked if she had any famous clients she answered “Yes – they include Lord Nelson and Charlie Chaplin!”

We are hugely thankful to both Stephen and Sue for taking part in these interviews – which reached a potential collective audience of over one million people – a great way to mark Wear A Hat Day and raise awareness! www.braintumourresearch.org Summer 2016 13

S A W 6 1 0 2 AY D R T E A I T H T A A H R A D WE AN R E T T E B , BIGGERAN EVER BEFORE! TH

Thousands of organisations, schools, clubs and individuals took part and donations have been flooding in ever since. All funds raised will help fund vital research into brain tumours and bring us closer to a cure – THANK YOU. 14 Summer 2016 www.braintumourresearch.org

Here are just a few of our HATTASTIC highlights!

WEAR A HAT DAY 2016

Help us FUND THE FIGHT Together we will find a cure

Moira’s Big Knit Challenge!

Moira McPartlin was moved to fundraise for Brain Tumour Research when she discovered that a friend from her past was battling a brain tumour.

An extremely active woman, Fiona was Moira’s squash partner, cycling companion, five-a-side teammate and weight-training coach!

“Many years ago, I worked with a young woman who had more life and energy for sport than anyone I have ever met...

All the fight and energy she used on the sports arena was now being channelled to keep her alive.

“During one recent communication with Fiona I became very frustrated. I wanted to do something - anything to help her.

I remembered her posting about wearing a grey hat for Brain Tumour Research. That afternoon in November 2015 I started to knit hats. I haven’t stopped since...”

And so ‘The Big Knit Challenge’ was born!

Moira set a goal of knitting 50 hats in time for

Wear A Hat Day. An incredible total of 118 hats were knitted and sold for The Big Knit Challenge, with Moira knitting 67 of these herself.

Fiona’s ex-work colleagues at CR Smith also held their own Wear A Hat Day at which they sold hats, cakes and pin badges, raising an amazing £1,000.

The crafty talents and contributions of Moira and friends even made it into the local press and ultimately raised an awesome £3,720!

www.braintumourresearch.org Summer 2016 15

WEAR A HAT DAY 2016

SPECSAVERS STAFF PUT BRAIN TUMOURS IN THE FRAME Specsavers stores in Exeter and High Wycombe held their own special Wear A Hat Day events in 2016 – raising funds and vital awareness for Brain Tumour Research.

The link between brain tumour diagnosis and opticians is important as brain tumours are frequently first detected during routine eye tests.

This could be because other medical investigations have been unable to consider the possibility of a tumour, or because no obvious symptoms have yet been observed.

Sophie Peters was 26 when she discovered she had a brain tumour after a chance eye test. The cause of her excruciating headaches, she strongly believes that if she hadn’t walked into Specsavers that day, her life-threatening tumour would have remained undiagnosed. (You can read Sophie’s full story at www.braintumourresearch.org/inhope ) Various Specsavers stores across the UK have supported Brain Tumour Research throughout the years and we are extremely grateful that Exeter and High Wycombe got in touch to let us know how much fun they had this year!

The Exeter branch sold pens and badges leading up to the event and staff had a great time wearing their wackiest hats for the day, some even added extras to their headpiece to make them totally unique. The team had a great time taking photos with their photo booth kit and also asked for donations with all spectacle adjustments.

Organiser Alan Langler was very pleased with how the day went: “We raised £250 and it was amazing.

There was a real air of fun on the day.

Thanks to all the staff and customers that helped to support it.”

Specsavers in High Wycombe held Wear A Hat Day festivities throughout the weekend, inspired by a patient who they had diagnosed with symptoms a year before. The patient went on to have their tumour removed, however their sight could not be saved. Staff were keen to get involved with the campaign to highlight the importance of keeping a check on your eye health.

The staff really entered into the spirit of it; wearing a range of exciting hats, selling pin badges and DOW bucket for donations. displayingWIN a collection They raised a wonderful £147!

HELP US

fund long-term, life-saving research at our Centres of Excellence

16 Summer 2016 www.braintumourresearch.org

Ladies who lunch!

Brain Tumour Research Chief Executive Sue Farrington Smith organised her own special event this year – an exclusive Ladies Lunch at The Old Thatched Inn at Adstock.

Twenty-five specially invited guests were able to show off their most fabulous headwear whilst enjoying an afternoon of delicious food and drink. This included a glass of Prosecco on arrival, main course and dessert, rounded-off with a selection of exquisite Petit Fours.

Care Executive at Brain Tumour Research, won £50 to spend at The Old Thatched Inn and very much enjoyed the occasion: “It was a fab afternoon filled with fun, games and great food! The atmosphere was great and the raffle prizes were fantastic – I can’t wait for next year!”

A raffle included lavish prizes kindly donated There was also an auction during which such as restaurant vouchers, Clinique attendees could bid on a range of exciting cosmetics and chocolate. Elise, Supporter items such as a beautiful Easter cake made

by local catering company Party Bakes, various framed artworks and a unique arrangement donated by Howes the Florist in Buckingham.

The afternoon concluded with some traditional party games organised by the host and her PA Sharon Stevens.

The event raised a very tasty £663!

www.braintumourresearch.org Summer 2016

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ON YER BIKE 2016 On Saturday 27th February 2016, hundreds of enthusiastic fundraisers got pedalling for our first national On Yer Bike event: a twelve-hour team spinathon challenge!

Supporters across England galvanised the support of their local communities, organising events at their local gyms, shopping centres, schools and community halls.

Leading budget fitness gym chain Xercise4Less, known as ‘the people’s gym’, was the national sponsor of the event, hosting On Yer Bike spinathons at six of their branches across the UK: Milton Keynes, Bristol, Leeds, Wigan, Stockton North and Wakefield.

On Yer Bike was also endorsed by Dr Dawn Harper, a familiar face on Channel 4’s Embarrassing Bodies and treasured ambassador for Brain Tumour Research. Dawn appeared in local and national press, encouraging participants for the event: ”Cycling is a great way to get moving whatever your fitness levels. A decade ago, I got on a bike to help heal a bad knee injury and I haven’t looked back. Now I’m encouraging people to get moving and raise money for Brain Tumour Research.”

Our thanks to Dawn for her loyal and enthusiastic support!

FOR BRAIN TUMOUR RESEARCH

Here is a snapshot of the pedal power we saw on the day!

Somerset:

Norton Hill School – pupils cycled the distance of Land’s End to John O’Groats in memory of 14-year-old Emma Welch, who was an avid fundraiser for Brain Tumour Research but tragically died last year from complications following routine surgery to treat the scoliosis curvature of her spine.

Devon:

Princesshay Shopping Centre – Our Community Fundraising Manager Peter Jordan, who lost his father, Jim, to a brain tumour was joined by his mum and John’s widow, Ann, 76 – it was the first time she had cycled in 50 years! She said: “It was daunting getting back on a bike after such a long time but I had a fantastic time and it was all worth it to raise funds and awareness for the charity.”

Cornwall:

Gyms in St Ives & Truro were joined by Derek Thomas MP, who took his turn for a spin!

Hampshire:

Cascades Shopping Centre – 400 miles cycled by 21 people over two days, equivalent to the distance between our four Centres of Excellence.

‘My Local’ convenience store in Elm Grove, Southsea held events in-store all weekend.

Inspired by On Yer Bike, tireless supporter Simon Tier, cycled 65 miles around the Isle of

18 Summer 2016 www.braintumourresearch.org

Wight with 11 dedicated friends! He summarised their adventure as follows: “One chain, four punctures and one shredded tyre later, and we made it. Better than that, we raised over £1,000!”

On Yer Bike for Brain Tumours was the brainchild of Paul and Jen Halfpenny from Glossop in Derbyshire.

Paul was diagnosed with a brain tumour in 2010 and immediately started chemo and radiotherapy treatment.

Although initially successful, in 2013 the chemotherapy regime proved no longer effective and Paul sadly passed away on 20th June 2014.

Paul’s wife, Jen, held a special On Yer Bike 2015 in memory of Paul and, combined with the previous two years, raised tens of thousands of pounds to support brain tumour research, helping to improve outcomes for others affected by this devastating disease.

North Yorkshire:

Mel Hennessy, founder of our Fundraising Group MINE hosted a fun event in Stockton. She reflected: “I feel so proud of everyone who took time out of their day to help raise awareness and money to help find a cure for brain tumours. Each and every one of you are superstars and I can’t thank you enough.”

Kent:

Amy King lost her mother to a brain tumour at the age of 16. She and seven friends were Team Flabbabike and raised almost £700.

Amy’s six-year-old daughter Lorelei also persuaded her school to hold their own Wear A Hat Day. An awesome team effort.

Naomi’s Fight for Life Fund held their event at Zone Fitness in Northallerton. The team smashed their fundraising target of £2,740 – nearing the £4,000 mark at the time of writing.

An amazing achievement.

Buckinghamshire:

Brain Tumour Research Chief Executive Sue Farrington Smith combined her pedal power with that of the Rt Hon John Bercow MP and many other charity supporters at Swan Pool in Buckingham. Between them, they beat their fundraising target of £2,740. Sue exclaimed: “The amazing energy and commitment shown by everyone who got on their bikes for Brain Tumour Research has been truly inspiring. The day was great fun and I’m delighted that so many people want to join forces to improve the lives of those affected by brain tumours.”

Just

Together we will find a cure

1%

of the national spend on cancer research has been allocated to this devastating disease

Xercise4Less in Milton Keynes was the venue of a real team effort led by our Trusts and Foundations Fundraising Manager Charlotte Rooke – a hero on the day, completing five turns on the bike! www.braintumourresearch.org Summer 2016 19

FUNDRAISER STORIES

THE SKY’S THE LIMIT

Sneha Charavda and her mum Amita had always dreamed of climbing Mount Kilimanjaro in Africa and made plans to do so together once Amita retired from the family jewellery business. However, Amita was diagnosed with and tragically passed away from an incurable brain tumour a few years before this could become a reality. Sneha reflected on her mother’s strength at the time: “The doctors told us the cancer was incurable and although mum fought bravely, three months later she passed away with our family by her side. The word incurable implies no hope but my mum always taught me to never stop believing in the power of hope.”

Determined to fulfil their dream, Sneha bravely decided to take on the challenge solo. On 20th September 2015, she climbed the 5,895 metres to the top of Mount Kilimanjaro and in doing so, raised more than £3,500 – far surpassing her target of funding one day of research (£2,740)!

Carol Robertson, Head of our Community Fundraising explains: “Sadly, Amita’s story is by no means unique and until we find better treatments and ultimately a cure for brain cancer, families will continue to lose loved ones, often well before their time.

20 Summer 2016 www.braintumourresearch.org

Just

1%

of the national spend on cancer research has been allocated to this devastating Help us disease

FUND THE FIGHT Together we will find a cure

Visit www.braintumourresearch.org/sponsor-a-day to find out how you can fund a day of vital research at one of our Centres of Excellence.

We are so grateful to Sneha and all her family and friends who have donated following her Kilimanjaro challenge.”

Thank you Sneha, we are incredibly proud to have you in our Fighting Force!

FINLAY’S LEGACY OF HOPE Finlay Church was diagnosed with a brain tumour in June 2014. In the 17 months after his diagnosis, Fin endured three operations, chemotherapy, a clinical trial and 12 weeks of daily radiotherapy.

He gained 20kg in weight from steroids, had partial seizures and lost the use of his left hand side, ultimately becoming bed-bound.

He lost his battle at the age of 11 on 25th November 2015, at home surrounded by his family.

A remarkable character, Fin set about fundraising for Brain Tumour Research and Birmingham Children’s Hospital soon after his diagnosis. In May 2015, the brave then 10-year-old organised a world record attempt for the most teddy bears in a row. Unfortunate timing meant that Fin had to oversee ‘Operation Teddy Bear’ from his hospital bed following surgery. However, thankfully he was able to witness the end of the event as the 15,534th teddy was laid – smashing the previous world record of 4,041!

Fin’s local community rallied behind him and his family, both with support during his treatment and in continuing to raise money for his chosen charities. Fundraising events have included the ‘Angels Without Wings’ ball, a ‘Movember’ campaign organised by Fin’s martial arts group Kombat Kids and a very mucky mud run, which raised over £3,000!

Funds raised by and in memory of Fin continue to rise, currently totalling over £60,000. This phenomenal amount is testament to Fin’s dedication to improving the lives of future brain tumour patients. His mother, Penny Church, continues to be an incredible driving force behind fundraising events and activities.

Fin’s parents agreed to share his story to help highlight the disease as national Brain Tumour Awareness Month got underway in March 2016. They released a poignant letter which Fin wrote to them just four days before he died. The letter contained his shattered career ambitions, dedications to family members and his feelings about cancer: “I’m a bit scared of losing the fight,” he admitted. “I hope I don’t. I’ve just got to keep on fighting. F cancer.”

Penny and Wayne’s emotional reading of Fin’s letter gained phenomenal global TV, radio and newspaper coverage, touching the hearts of thousands.

Named a ‘Child of Courage’ at the Pride of Birmingham Awards 2015, Fin’s legacy will live on in the research he has helped to fund at our Centres of Excellence and in the awareness raised by his brave and selfless actions.

Read Finlay’s full story as told by Penny on our website: www.braintumourresearch.org/in-our-hearts Visit and like Finlay’s Journey on Facebook: www.facebook.com/Finlaysjourney www.braintumourresearch.org Summer 2016 21

FUNDRAISER STORIES

THE TOUGHEST RACE ON EARTH

Image: Ted Martin

Callum Gathercole crosses the finish line of the Talisker Whisky Atlantic Challenge.

Brain tumours kill more children and adults under the age of 40 than any other cancer 22 Summer 2016 www.braintumourresearch.org

Image: Ted Martin

Fundraising challenges don’t come much more exhausting than this: a single-handed row across the Atlantic Ocean! Callum Gathercole took on the Talisker Whisky Atlantic Challenge in memory of his father Clive, who passed away from a glioblastoma in August 2012. Following Clive’s death, Callum became determined to raise funds so that fewer families in the future would have to face the consequences of this devastating disease.

Imag

e: Be

n Du

ffy

Together we will find a cure

During moments of rest, Callum occupied himself with watching TV, topping up his calories or looking out for marine life. However the trip was far from ‘plain sailing’: “There were a fair

He also had a close encounter of the nautical kind... “I was just going to sleep. I have a collision avoidance system and that went off. I opened my cabin and saw the lights of Image: Ben D uffy

few days where there was a crosswind or a headwind and I knew on such days that I had to slog through this row, through this day and it was really horrible. It was like I was rowing through custard. That was a phrase that kept going through my mind – ‘it’ll be better soon’.”

artin Image: Ted M

The Atlantic Challenge covers an awesome 3,000 nautical miles; indeed, more people have been into space or climbed Everest than have rowed across the Atlantic Ocean! Not only this but at the tender age of 20, Callum became the record-holder for the youngest person ever to do so, confirmed by the Ocean Rowing Society.

a ship coming. That was really scary – I thought it would hit me. I called them on the radio and they didn’t reply for quite some time. The ship crew eventually saw me and steered away. That was probably the scariest moment.”

Callum crossed the finishing line in Antigua 58 days 15 hours and 15 minutes after setting off from La Gomera. An astounding personal achievement which raised money for three charities; Brain Tumour Research, Princess Alice Hospice and BRACE. We can’t thank Callum enough for helping to raise funds, and the profile of Brain Tumour Research in this way – a true Fighting Force hero!

You can read his dad Clive’s story, Callum’s inspiration, on our website: www.braintumourresearch.org/in-our-hearts

www.braintumourresearch.org Summer 2016 23

D O O G A HOST T E G R E M TIME SUMR...

E TOGETH rch! a e s e r l a it v d n fu lp ...and he

HELP US R GET CLOSE...

TO A CURE

by hosting a coffee er m m Su e th g n ri du a, BBQ or dinner te n o o rn fte a , g in morn mour Research – party for Brain Tu b me friends, gra simply gather so enjoy! some grub and

RAISING £300

covers the cost of equipment used during one day of life-saving research at one of our centres!

24 Summer 2016 www.braintumourresearch.org

COFFEE MORNING GET TOGETHER

SET YOURSELF A £300 TARGET AND AIM TO SMASH IT!

Fundraising Tips

T

1. Set a fundraising target Aim for £300 and you will be funding all the pipettes, solutions and dishes needed for one day of research at any one of our GET TOGETHER Centres of Excellence. Simply sell tickets for your event and hold a raffle or auction!

TEA TIME!

LET’S DO LUNCH!

2. Ask a favour

GET TOGETHER

Whether you’re asking for food, drink, raffle prizes or venue hire – you’ll be surprised how generous people and companies will be when you tell them why you are holding your event.

3. Shout about it!

US DELICIOER

DINNTY PAR ETHER

B BQ BONAN

ZA!

GET TOGETHER

Create a Facebook event; display posters at your school/ workplace/club; share your story with the local press and add your JustGiving link to your email footer. There are so many ways to capture people’s imagination and ask for delicious donations.

GET TOG

Visit www.myhostforhope.org for more information and email hostforhope@braintumourresearch.org to let us know what you’re planning! www.braintumourresearch.org Summer 2016

25

RESEARCH INTERVIEW

MEET THE SCIENTISTS

fund a research centre

In November 2015, Brain Tumour Research gained a vital new member of the team when Dr Kieran Breen joined as Director of Research.

Kieran’s appointment is a landmark moment for Brain Tumour Research as his specialist knowledge, experience and expertise will not only allow us to communicate research progress clearly with our supporters, but also facilitate more frequent collaboration between brain tumour researchers; not just amongst our Centres of Excellence, but also, globally.

to put an end to brain tumours

Help us FUND THE FIGHT Together we will find a cure

Now over six months into his role, Kieran is already making a huge difference simply by being in regular communication with the scientists we fund. Loredana Guglielmi is a Postdoctoral Research Fellow at the Blizard Institute, Queen Mary University of London (QMUL) – our Centre of Excellence established in 2014.

One day in April 2016, Kieran and Loredana got together to talk about their respective careers, common research areas and hopes for the future of brain tumour research.

Kieran Breen, Director of Research

Loredana Guglielmi, Postdoctoral Research Fellow at the Blizard Institute, Queen Mary University of London 26 Summer 2016 www.braintumourresearch.org

Kieran: Where and when did your interest begin in medical research?

Loredana: When I was at high school, I was actually in the humanities stream studying literature, philosophy and linguistics. This was in addition to being given an opportunity to study maths and the sciences. One of my linguistic projects involved data analysis and it was then that I realised that I would prefer to move into science rather than to stay in the humanities area.

So, I registered for a science degree when I went to university. I did my PhD near Rome at the National Institute for Research on the study of cell biology. What about you?

Kieran: At school, I had to choose between business studies and science. I was told that I would never earn any money in science, but I did it anyway! My initial degree was in pharmacology – the study of how drugs work – and I was fascinated by how complex the brain was and how little we know. My PhD was on nerve cell development, but I did some research on why brain tumour cells link with each other in a different way to normal cells. My research then moved to the study of Alzheimer’s and Parkinson’s, but here I am again in the area of research into brain tumours.

Kieran: What research are you carrying out at the moment?

Loredana: I joined Silvia Marino’s lab in April 2015 when she was awarded funding from Brain Tumour Research to set up a Research Centre of Excellence at QMUL. My main area of research interest to date had been the study of genomics – how genes work in cells, and what may happen when this goes wrong – and this post has given me an opportunity to gain more experience in this area. My PhD involved the study of cancer cell genetics and I also worked in Cambridge for eight months studying epigenetics – what actually happens to cells when their genetics change. This work was carried out in blood cells. However, this is one of the key experimental techniques

being used in Silvia’s lab, so I can build upon my existing expertise and also further develop my skills and apply them to the study of brain tumours. I am also learning how to carry out data analysis from the information that we generate in the studies so that we can make the best use of it.

Kieran: What do you think is the most promising research area in the study of brain tumours?

Loredana: There is a lot of data being generated at the moment by people studying specific cell types such as glioblastoma. This is referred to in research field as “-omics” – how different components change in tumour cells and how these may interact. This provides us with a better overall view of what is happening rather than focusing just on one gene or protein that may be changed. But we need to work together to ensure that we make the best use of the data that has been generated by sharing it between research groups throughout the world. And the Brain Tumour Research Centres of Excellence provide an opportunity where this could happen, because researchers are generally not very willing to do so at the moment. And you?

Kieran: Well, I agree with you about data.

There is lots of data out there and if all of this is analysed together, it will really bring our understanding of cancer in general, and brain tumours in particular, to a new level. But, as you say, it all depends on the data being shared, and this is where Brain Tumour Research can play a key role. As you know, we organise an annual scientific workshop with members of the centres where we can discuss this and decide the best way forward.

Kieran: How do you see your career progressing from here?

techniques that are being used to study them.

Silvia’s lab is at the forefront of this area of research and as well as increasing our knowledge, I hope to be able to share this by the publication of key research papers. I have two years left in my current position after which I hope to be able to apply for a personal Fellowship where I will get a grant to build up my own lab within the centre.

I would like to continue to carry out research on brain tumours as I think that it is important that a researcher should focus on one particular area.

But obviously that depends on me being able to get the appropriate funding!

Kieran: So, Loredana, have you any questions for me?

Loredana: Do you see Brain Tumour Research funding studies outside the UK in the future?

Kieran: We have no plans to do so. However, we feel that the establishment of Research Centres of Excellence within the UK will help to build up the overall research capacity for the study of brain tumours. The researchers within the centres can then use their experience to collaborate with other researchers throughout the world to obtain international funding from other sources such as the EU. Kieran: Finally, if you had not followed this career path, what would you have done?

Loredana: That’s difficult, but I think that I would like to have stayed in science, but maybe do something in the area of biomedical engineering. And you?

Kieran: I always liked science at school. But, a friend of mine went back to university to do a history degree when he retired, so maybe I’ll do something similar in the years to come!

Loredana: Working at QMUL has allowed me to use my existing skills, but also to learn more about brain tumours and the up-to-date www.braintumourresearch.org Summer 2016 27

RESEARCH UPDATES

Closer to a cure: Brain tumours kill more children and adults under the age of 40 than any other cancer

We are striving to fund a network of seven dedicated research centres in the UK in order to build a critical mass of experts working towards finding a cure for brain tumours. Our unique funding strategy means that all four of our already established research centres are able to work consistently on research projects in key areas, without the limitations associated with traditional grant funding.

In this issue, we are pleased to be able to share updates from the frontline of research at our Portsmouth and Plymouth Centres of Excellence.

28 Summer 2016 www.braintumourresearch.org

Research updates Head of our Centre of Excellence at the University of Portsmouth, Professor Geoff Pilkington, with the Therapeutics Research Sub-group Lead, Dr Richard Hill and the Mitochondria Research Sub-group Lead, Dr Rhiannon Lloyd. These two research teams work closely together in engineering and testing new mitochondrially targeted approaches for the treatment of both paediatric and adult brain tumours.

University of Portsmouth The latest from Professor of Cellular and Molecular Neuro-Oncology, Geoff Pilkington.

their tumour cell killing effect not via the nuclei, but via tiny bodies within cells which produce energy. These energy producing bodies are called mitochondria and the Portsmouth team discovered that certain drugs, which had previously been used for treating completely different diseases, by way of different biological mechanisms, could gain entry into tumour cell mitochondria, but not into normal cell mitochondria. This is due to the fact that the membranes around mitochondria of cells within the tumour offer less resistance than those around normal cell mitochondria. Once inside the tumour cell mitochondria, the drugs led to the ‘suicide’ of these malignant cells.

For decades, patients with malignant primary brain tumours have been treated with DNAalkylating drugs, such as temozolomide, which target the DNA within the control centres of the cells, the nuclei. Sadly, these offer little benefit over and above the radiation therapy which these patients are likely to have received. There are a number of reasons for this, firstly, the way these drugs work is by breaking strands of DNA, leading Such “re-purposed” drugs, which to cancer cell death, but brain tumour cells have include anti-depressant and a very efficient DNA strand-break repair kit, called anti-malarial agents, are now MGMT, which mends these breaks. In addition, under intensive study in the these drugs can also damage the normal brain Portsmouth laboratories. cells and frequently do not even reach the outlying tumour cells which have spread into The focus has now switched from a concentration areas of normal brain. on the nuclear DNA as a target for therapy to one on the mitochondria. Interestingly, mitochondria Not happy with this approach, researchers at have their own DNA and the mitochondrial DNA Portsmouth have been concentrating on drugs from biopsies of many patients with GBM, as well which they discovered selectively killed tumour cells, but left normal brain cells unaffected. They as paediatric brain tumours, is being screened for specific mutations which might lead to significant then discovered that these drugs, which also clinically relevant findings. Several key mutations crossed the blood-brain barrier, meaning they could reach all the tumour cells, even those which have already been identified; of particular interest had invaded deep into the normal brain, exerted are those which have functional significance to

the behaviour of cancer cells and their response to different drugs. In order to study the identified mitochondrial DNA mutations in a simple environment, yeast cells are used (this approach has been used previously to address important questions in cancer biology).

Identifying specific mutations which correlate with drug response to certain mitochondriallyacting, repurposed drugs will enable the team to determine which patients should, and which patients should not, be treated with these drugs.

Furthermore, by use of structural biology computer-generated modelling systems, it is possible to design new drugs to treat, for example, particular sub-groups of patients within the broad group of glioblastoma.

fund a research centre to put an end to brain tumours

www.braintumourresearch.org Summer 2016 29

RESEARCH UPDATES

Plymouth University PhD Researcher, Kayleigh Bassiri BSc Msc talks about the centre’s current projects: The research at our Centre of Excellence within be tested on tumour cells in the laboratory, as Plymouth University is focused on finding novel a pre-clinical assessment of their effectiveness. methods to treat low grade brain tumours.

Furthermore, they can take brain tumours known Researchers are concentrating on meningiomas to have specific genetic mutations and define their and schwannomas, which are two common proteomic signatures based on these mutations. tumours that form both spontaneously as well This will allow the researchers in the long-term as being associated with an inherited condition, to look directly for specific features in each neurofibromatosis 2 (NF2). At present, there patient’s tumour that will help them choose the are no drugs approved to treat either of these best treatment option. Their most recent project tumour types. Patients have only surgery and is looking at patient blood samples to identify radiotherapy as their treatment options, and circulating tumour biomarkers that can also help these are not always effective or even possible us to decide on the best course of action, this is depending on the location of the tumour. As what is called liquid biopsy. The advantage of this part of the team’s programme of translational technique is that it is much less invasive than a and stratified medicine, they focus their efforts tumour biopsy. on identifying biomarkers that will improve the speed and accuracy of diagnosis, as well as new Plymouth University’s long-term vision is that drug targets than can be utilised in more effective they will be able to characterise each tumour into therapies. Biomarkers are biochemical factors, sub-categories giving patients a higher chance of ideally in the blood, which could indicate whether responding to a particular drug. They aim to use somebody has a tumour, how it is developing and this process within the next few years, using a whether it is responding to treatment. modern trial design.

Researchers at Plymouth University have entered the era of ‘personalised medicine,’ in translational brain tumour research.

It is no longer acceptable to aim to treat all patients with the same drug, as some patients are less likely to respond than others to certain drugs.

This is largely due to heterogeneity between tumours, or the presence of many cells within a tumour expressing different proteins, that dictate how a person will respond, or how likely their tumour is to become resistant to a particular drug.

Using a technique called mass spectrometry, researchers are able to analyse brain tumour samples directly from patients to define their ‘proteomic signature,’ or in other words find out what proteins are expressed more highly in cancer cells compared to normal cells. This allows them to then identify drugs already available that can 30 Summer 2016 www.braintumourresearch.org

Just

HELP US

fund long-term, life-saving research at our Centres of Excellence

1%

of the national spend on cancer research has been allocated to this devastating disease

Together we will find a cure

Join us on a tour of one of our Centres of Excellence to see this ground-breaking research taking place, first-hand!

www.braintumourresearch.org/centre-lab-tours ➜ The team at Plymouth University is led by Professor Oliver Hanemann

www.braintumourresearch.org Summer 2016 31

FUNDING RESEARCH

EQUIPPED FOR

EXCELLENCE Here is a snapshot of a research lab at one of our Centres of Excellence. The range of equipment needed by our scientists is huge – here are just a few examples of the day-to-day ‘consumables’ HELP US that our teams need to carry out their fund long-term, life-saving vital research. research at our

Centres of Ranging from 26p for a flask to Excellence £240 for an extraction kit, these are essential items needed to 4 NITRILE SURGICAL GLOVES help drive progress in brain The most durable of all sensitive rubber gloves, wearing these is a tumour research. Just one of necessity for health and safety, and again to avoid contamination our centres would need over during the intricate experiments. £100,000 per year to cover £4.00 per box of 100 these basic costs.

(Quantity used per year: 150+ boxes)

5 TISSUE CULTURE MEDIA 1 TISSUE CULTURE FLASKS

A core item in every lab, these are used to grow cancer cells.

They can only be used once, so a continuous supply is necessary but costly over time.

26p-46p each (Quantity used per year: 100s)

2 MICROPLATES

Essential for researching the effects of different chemotherapy drugs on tumour cells. Multiple trays are used on a daily basis.

Approx. 50p each (Quantity used per year: 100s)

3 MICRO PIPETTE TIPS

These disposable tips are used with the Gilson pipettes (see item no.

6). They help speed up processing and reduce cross-contamination. £3.40 per box of 96 (Quantity used per year: 500-1,000 boxes)

32 Summer 2016 www.braintumourresearch.org

These are the liquids in which cancer cells are grown so that they can be used for experiments. They are grown at body temperature so that the results are as true-to-life as possible. £11.70 per bottle (Quantity used per year: 240 bottles)

6 GILSON PIPETTOR

This electric pipette is used for moving liquids around in micro quantities (one millionth of a litre) – allowing for the extremely intricate and accurate work needed in neuro-oncological research. £107 each (Quantity used per year: Around 50)

7 RNA/DNA EXTRACTION KIT

Researchers use these to isolate RNA/DNA from a variety of tissue samples. This is then used in experiments to help understand brain tumours at a genetic level to move towards greater personalised treatments. £240 per kit (5-20 kits per year)

3 5

2

1

Could you help us to keep these costs covered?

Set up a regular standing order – see page 49 to find out how.

4

6 7

Text RSCH16 £5 to 70070 to donate £5

www.braintumourresearch.org Summer 2016 33

A reception to celebrate the

Brain tumour research funding needs to increase to ÂŁ35 million a year

On 9th March 2016, at the beginning of Brain Tumour Awareness Month, we were joined by 150 guests at our annual Speaker’s House event at Westminster.

MPs, scientists and supporters came together to create a united voice, raising awareness for the lack of research funding brain tumours receive.

The evening saw a kind welcome from Brain All attendees were asked to wear their favourite Tumour Research patron Rt Hon John Bercow hat for the event as we continued the countdown MP, as well as poignant and moving speeches to Wear A Hat Day 2016! from Chair of the Petitions Committee Helen Jones THANK YOU MP, Chair of the All Party Parliamentary Group on brain tumours Rebecca Harris, and Maria Lester, to everyone who joined us who started the petition for greater brain tumour for this inspirational evening. research funding after the tragic loss of her brother Together we will find a cure.

Stephen. (Read their full story on page 36) 34 Summer 2016 www.braintumourresearch.org

Campaign with us

Just

1%

of the national spend on cancer research has been allocated to this devastating disease

success of our e-petition

www.braintumourresearch.org Summer 2016 35

E-petition and debate

Cover story

THE E-PETITION

In August 2015, a year after losing her brother to a brain tumour, journalist Maria Lester set up an e-petition calling for more funding for brain tumour research. She was determined that her brother Stephen’s death at the age of just 26 would not be in vain. After just one week, the e-petition had been signed over 10,000 times, prompting the Government to publish a formal response.

It was clear that Stephen’s story had captured the hearts of many and the e-petition became a tangible representation of the collective voices of those whose lives had been devastated by the effects of brain tumours.

Upon reaching 14,000 signatures, the Petitions Committee announced that they were to launch a formal inquiry. On 20th October 2015, the public were invited to share their personal stories on the Petitions Committee’s web forum. In just ten days, 1,104 comments had been submitted.

This formed a comprehensive database of evidence for what they announced would be their first-ever inquiry.

The first of four evidence-giving sessions took place on 3rd November 2015. The emotion, strength and determination of those who spoke

Brain tumours kill more children and adults under the age of 40 than any other cancer… Yet just 1% of the national spend on cancer research has been allocated to this devastating disease.

That’s why Brain Tumour Research treats lobbying and campaigning as a priority. was undeniably powerful and the Petitions Committee were left in no doubt of the support behind the cause.

Maria, her parents Liz and Peter Realf and countless other dedicated supporters were tireless in their campaigning for signatures and Brain Tumour Research was also committed to galvanising support for the e-petition.

Momentum grew steadily over the Christmas period and culminated in a frenzy of signatories amid saturated media coverage across the country during the final weeks leading up to the deadline of 3rd February 2016.

The final signature count came in at 120,129; an unprecedented success and the greatest momentum for any petition into brain tumours in the UK. Maria Lester and family at Speaker’s House

36 Summer 2016 www.braintumourresearch.org

THE REPORT

On 14th March 2016, just over one month after the e-petition closed, the Petitions Committee published their official report into the issue of brain tumour funding.

‘Funding for research into brain tumours’ is a comprehensive, 73-page document outlining their findings and detailing recommendations to the UK Government for improvement.

Fundamentally, it concluded that brain tumour research funding has been “inadequate and not given sufficient priority”.

The report launch event at Westminster Hall was attended by Brain Tumour Research supporters, MPs and other cancer charities and was another chance for those all-important voices to be heard right at the heart of UK Government.

In the weeks leading to the debate we used every available resource to encourage MPs to attend. Activity included encouraging our supporters to write to their local MP; publishing a call-to-action in The Times newspaper (signed by scientists and celebrities including Debbie McGee, loving wife of the iconic Paul Daniels who had died from a brain tumour just a few weeks before) and Rebecca Harris MP, Chair of the All Party Parliamentary Group on brain tumours sending a personal appeal and copy of ‘Danny’s Journey’ – a book recently written by Danny’s father, co-founder of one of Brain Tumour Research’s Member Charities, The Danny Green Fund – to all MPs.

At last, we have been heard THE DEBATE

Monday 18th April 2016 represented the pinnacle of years of support, strength and unanimity on the subject of research into brain tumours, as over 70 MPs attended a standing-room only debate at Westminster Hall – broadcast live on Parliament TV. Such was the urgency of attending MPs to share their constituent’s moving stories, they had to be restricted to four minutes each. Emotions ran high among some MPs as they shared some heart-breaking stories of their constituents – brain tumour patients, their families and their friends who had been let down time and time again by the lack of investment in brain tumour research. Treatment options for brain tumours lag severely behind those for other, better-funded cancers leading to disproportionate and shockingly low survival rates.

Sue Farrington Smith, Chief Executive of Brain Tumour Research said: “I am immensely proud that, with the support of thousands of patients, families and activists, the woeful underfunding of this dreadful disease has finally been acknowledged. Our voices have been heard and the work of the past 15 years has not been in vain.

“Some of the key issues highlighted in our Invest In A Cure manifesto have been addressed and we will continue to apply pressure to ensure genuine progress is made. We have reached an important milestone on our journey and we will continue with renewed determination.”

At the end of the three-hour debate, Health Minister George Freeman MP announced a package of measures to address the issues presented by MPs. He said the Government will now: • Establish a ‘Task and Finish’ working group at the Department of Health. This will be a special project team who will conduct an in-depth review of the key areas and recommendations set out by the Petitions Committee in their report.

WHAT NEXT?

We are now looking positively to a future in which the Government can use these new measures to start supporting those who have been let down for far too long.

It is with great sadness however, that we reflect on the fact that the stories told at the debate (and beyond) are due to the hundreds of lives that have been lost while fighting and waiting for change.

The future is still unclear for brain tumour research funding, but we are more confident than ever that if we continue to stand in solidarity with our supporters, MPs and larger cancer charities, we can and will bring change.

• Request that the National Institute for Health Research (NIHR) produce a national register within a year to examine how public funds are spent on research. This will examine spending on different disease areas and different organs, including the brain, by the different treatments used.

Together we will find a cure.

• Seek to improve levels of earlier diagnosis and include brain cancer in the Genomics England programme.

to be added.

Brain tumour research funding needs to increase to £35 million a year

Help us support vital research today. Text CURE35 £5 to 70070 to make a donation.

Keep up-to-date with all the latest lobbying progress by signing-up to our email bulletins. Simply email

sharon@braintumourresearch.org

You can also go online for the latest lobbying news, to register your interest in future campaigning events and to read our ‘Invest In A Cure’ manifesto:

www.braintumourresearch.org/ campaign-with-us

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CAMPAIGNING

MPs GETTING INVOLVED of St Helens Citizens Advice Bureau, Yvonne Fovargue has worked all her life to fight injustice and to speak up for those without a voice in society.

Yvonne is the Member of Parliament for Makerfield in Wigan, Greater Manchester.

During the last Parliament Yvonne served as an Opposition Whip, Shadow Minister in the Transport and Defence Teams and as Shadow Minister for Young People.

Yvonne Fovargue MP

Cutting her teeth as a Housing Officer on the Moss Side estate, Manchester in the early 1980s and later in her role as Chief Executive

Yvonne currently holds the Consumer Affairs & Science brief in the Shadow BIS team.

She is Chair of the All Party Parliamentary Group on Debt & Personal Finance. She is also an active campaigner and advocate for Credit Unions.

She is a member of MENSA, an avid reader of crime fiction and a fan of the music of David Bowie.

Yvonne is supporting constituent James Hinnigan who recently underwent surgery following a brain tumour diagnosis.

James rallied the support of people in both Yvonne’s constituency of Makerfield and neighbouring Wigan. Makerfield achieved the most signatures (2,269) of any constituency throughout the UK in the recent e-petition.

Together we will find a cure

Upon returning to England, Tom attended Imperial College, London where he gained a BSc (Hons) degree in Physics.

In 1988 he became a Liberal Democrat Councillor in Hackney and then in Sutton.

Tom Brake MP

Tom Brake has been the MP for Carshalton and Wallington since 1997.

Tom was born in Leicestershire and from the age of eight, lived with his family in France, attending the Lycee International.

Tom has recently raised awareness of the need for an increase in the percentage of national spend on research into cancer to be spent on research for better diagnosis and treatment of brain tumours and is proud to support Brain Tumour Research.

Having been a Government Minister during the Coalition Government, Tom is now the Liberal Democrat Foreign Affairs Spokesperson, Chief Whip and Shadow Leader in the House of Commons. For nearly His recent Early Day Motion calling for 20 years Tom has championed his local area support gained the signatures of 68 cross-party MPs. and represented thousands of constituents.

He has campaigned for many years on transport and health issues within Carshalton and Wallington and has won numerous awards in recognition of his campaigning.

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Campaign with us

RAISING AWARENESS Our zealous team of PR professionals is always on the case tracking down good opportunities to raise awareness and funds for Brain Tumour Research.

In the countdown to the closure of the e-petition on 3rd February, PR managers Susan and Liz (pictured below) were rallying supporters across the UK to share their stories in the media to ensure the magic total of 100,000 signatures was reached – enough to spark a parliamentary debate. And you didn’t let us down! Thanks to numerous radio and TV interviews and features in national and regional newspapers, the final tally of signatures was more than enough – in excess of an eye-watering 120,000!

Highlights included Maria Lester, the originator of the online petition on the anniversary of the death of her brother, Stephen Realf, executing an amazing call to arms on BBC Breakfast, our very own Director of Research, Dr. Kieran Breen’s

motivating interview on Sky TV and journalist Nicki Waterman’s feature in the Sun about remaining incredibly positive despite her diagnosis with an aggressive brain tumour, just weeks after losing her husband. Nicki went on to be interviewed by Lorraine Kelly on ITV breakfast television.

Dedicated supporter, Emily Corrigan, just 28 when diagnosed, decided that the e-petition warranted shock tactics. Normally going to great lengths to hide it, she courageously decided to post a photo of her great big scar on Facebook (pictured above left). The post went viral and was shared 18,745 times, leading to a powerful piece in the Daily Mail on the very last day that people could register their signature.

Throughout the UK, the rally cry for signatures went out across social media, with a fiercely-fought competition to be the constituent with the most signatures.

This accolade finally went to Makerfield, largely down to the extraordinary inspiration of Ashton-in-Makerfield dad, James Hinnigan (pictured above right with his young family), who mobilised thousands to sign the e-petition while waiting for a date for brain surgery and to join a clinicial trial.

Following the publication of the Petitions Committee first ever report, we were able to secure yet more national headlines. None more so perhaps than in The Independent which led with a headline announcing that Health officials have “failed brain tumour patients and their families for decades.”

We’d like to say a huge thank you to everybody who helped make brain tumour history and secure a milestone debate at Westminster.

Together we will find a cure.

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MEMBER CHARITY UPDATES

Anna’s Hope

On 8th October last year, Anna’s Hope was the chosen beneficiary of Global Radio’s ‘Make Some Noise’ campaign, which unites all of Global’s radio stations in helping disadvantaged children and young people across the UK; collectively reaching 24.1 million people every week.

This was a unique opportunity for our member charity to reach a large audience with their story in order to increase awareness of this devastating disease. In addition to this, in April 2016 they received a cheque for the incredible sum of £49,650 – the total raised through the campaign!

Carole Hughes, Founder of Anna’s Hope spoke of the significance of Global Radio’s support: “We are very grateful to Heart, Global and all their listeners for their generosity in supporting Anna’s Hope and in helping us raise awareness for all of the work we’re

doing. Anna certainly changed our lives and now is changing the lives of 100’s of children in the region. This extra funding that Global’s ‘Make Some Noise’ has given will make a huge difference to our work.”

Anna’s Hope was established by Rob and Carole Hughes after their three-year-old daughter, Anna, passed away from a brain tumour just 15 months after diagnosis. You can read their full story on our website www.braintumourresearch.org/in-ourhearts. The charity’s purpose is to provide specialist neuro-rehabilitation support to children in the East of England and they have recently helped to establish a pioneering new service called Brainbow at Addenbrooke’s Hospital.

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Find out how you can support Anna’s Hope at: www.annashope.co.uk

Manchester and The Walton Centre for Neurology and Neurosurgery. Their laboratory-based funding is currently focused at the Brain Tumour Research Centre of Excellence in Plymouth University.

Astro Brain Tumour Fund

Brain Tumour Research member charity Astro Brain Tumour Fund (ABTF) has had another successful year, with increasing numbers of supporters. Imaginative fundraising events brought in hugely appreciated funds to support research into finding a cure for low-grade gliomas. Over the last 15 years ABTF has funded innovative research at the Children’s Brain Tumour Research Centre, Queen’s Medical Centre, Nottingham, Birmingham Children’s Hospital and Institute of Child Health, Royal Marsden Hospital and Institute of Cancer Research, National Hospital for Neurology and Neurosurgery at Queen Square, London, Hull Royal Infirmary, Blizard Institute at Queen Mary’s, University of London, Wolfson Molecular Imaging Centre at The University of

On the clinical front, ABTF remains committed to bringing new therapies to patients as quickly as possible. They are therefore working in close collaboration with the inspirational charity Matthew’s Friends, together funding a ground-breaking clinical support service for both low and high-grade patients wishing to use ketogenic dietary therapy alongside their standard package of care and treatment. Benefits of the diet have been proven to help children with epilepsy but it is too early to say how effective it is for the treatment of brain tumours. There are a handful of individual case studies where the ketogenic diet is believed to have contributed to effective treatment of a brain tumour. But this is still controversial; it is too early to say this is proof.

Clinical trials are being planned for the UK and we hope to see more conclusive evidence of the therapeutic qualities of the ketogenic diet in brain tumour patients soon.

Patients should not attempt a ketogenic diet on their own; this therapy needs careful medical supervision by the Matthew’s Friends team in partnership with neuro-oncology clinicians.

If you would like to know more about ketogenic dietary therapy and the existing clinical support service for brain tumour patients, please see the Matthew’s Friends website at www.matthewsfriends.org or call them on 01342 836571.

To help Astro Brain Tumour Fund raise money to support the research, please contact them via their website at www.astrofund.org.uk or call them on 01485 52 52 79. Your contributions large and small will make a real difference.

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MEMBER CHARITY UPDATES

brainstrust

Never feel lost with brainstrust ’s guide to support in your area.

Brain tumour support charity and member of Brain Tumour Research, brainstrust has recently launched a number of new editions of ‘The Little White Book’. These directories, which are produced regionally, signpost people living with a brain tumour and their families to all of the support available in their local area.

They feature details on a range of services including networking, psychological support, financial advice and complimentary therapies, alongside many more. The books serve as another part of brainstrust’s personal support

service and resources, which helps people to feel less afraid, less alone and more in control in the face of a terrifying brain tumour diagnosis.

Helen Bulbeck, Director of Services and Policy at brainstrust says:

“We know how lost you can feel when you or your loved one is diagnosed with a brain tumour. But we also know how many invaluable support services there are available locally that can help you at every step of your brain tumour journey. We’ve worked tirelessly at brainstrust to find the best local services to help people, and we’ve put them all in these easy to access guides. The books, alongside our 24/7 support, will help people live a better quality of life, which we know can lead to a better outcome” Visit: www.brainstrust.org.uk/advice-resources.php to read more about the guides and to request your copy.

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Brain Tumour Research Campaign (BTRC)

BTRC ended another successful fundraising year with their annual carol concert at the beautiful All Saints Church in Fulham – there was a slightly different flavour with a guest performance by the Refuge Temple Gospel Singers who gave an upbeat rendition of Silent Night and Hark the Herald Angels Sing. The All Saints Choir was also joined by Charing Cross Hospital brain tumour patient Reuben Hill who earlier in the year featured in a BBC documentary on the state-of-art neurosurgical tool, the Raman probe, which is being trialled at Imperial College and was used to remove a brain tumour while he sang hymns!

Another Charing Cross patient and huge BTRC supporter, Anna Swabey, has galvanised a veritable army of supporters to help her raise an ambitious target of £100,000. Already well on her way to achieving this, a Spring highlight was a trip to Paris, where 12 runners competed in the Paris Marathon in support of Anna’s campaign.

They all completed the course at varying speeds ranging from 2.75 to 5.75 hours. But between them they raised a staggering £20,000+!

One of the runners merits special credit – Sarah Hargreaves decided that running the Paris marathon was not challenging enough for her, so the following day got on her bike and cycled to Amsterdam, where she ran another marathon the following Sunday!

Meanwhile BTRC’s research projects at Imperial College London made some significant advances in the clinical research arena, with some groundbreaking neurosurgical tools – featured on national television – which bring the laboratory into the operating theatre, by giving surgeons a molecular fingerprint of the tumour within seconds, which can subsequently be analysed in depth in the laboratory, allowing the scientists to suggest new treatment options which can attack the tumour and lead us closer to a cure.

Visit: www.wayahead-btrc.org

The Danny Green Fund

Danny Green was a fit, healthy and active 10-year-old boy when he was diagnosed with a grade 4 medulloblastoma in November 2011.

He fought a brave 10-month battle against the disease but eventually lost his fight in July 2012.

Danny’s parents Lisa and Chris established The Danny Green Fund to raise money for research and increase awareness of not only brain tumours but Posterior Fossa Syndrome – a post-operative condition common with brain tumour patients – from which Danny suffered on a daily basis.

Posterior Fossa Syndrome (PFS) is a condition which manifests as neurological symptoms such as mutism, weakness in one side of the body, ataxia (unsteadiness), poor muscle tone, partial facial paralysis and incontinence, to name a few. Danny suffered hugely from many of these symptoms, though luckily with intense physiotherapy he was able to overcome most of these problems and could walk with the aid of a walking frame.

In Danny’s memory, the family have already been able to improve the lives of many children suffering from PFS, helping them to regain their strength, co-ordination and mobility through a range of therapy type, from horse riding to hydrotherapy.

and of radiotherapy and is not promised a cure.

“Our family didn’t get the happy ending we so desperately wanted but Danny is the inspiration for all we do and hopefully ‘Danny’s Journey’ will help others to understand just how devastating brain tumours can be for both the child and the whole family.

We are passionate about working with Brain Tumour Research and are honoured to be a member charity. We hope that ‘Danny’s Journey’ will help the fight for more research spending for brain tumours, as without research there will be no cure.”

‘Danny’s Journey’ is available to buy directly from www.thedannygreenfund.org.uk or via Brain Tumour Research’s eBay page, www.ebay.co.uk/usr/braintumourresearch

Danny’s father Chris has now written a book to further raise awareness of brain tumours and their tragic effects. ‘Danny’s Journey’ is the retelling of his son’s tragic story from a deeply personal perspective.

“I wanted to show what a warrior he had been and how he had been affected by his brain tumour. Sadly a child with a brain tumour has to endure so much, has to cope with the effects of harsh chemotherapy drugs

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CONQUER IT TOGETHER

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Grand Union Canal Walk 24th September

Swim The Serpentine 24th September T

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Berlin Marathon 25th September

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Royal Parks Half Marathon 9th October

Great South Run 23rd October

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London Santa Run 3rd December

South West Fire Walk 5th November

23rd April 2017 Virgin London Marathon – places available!

We are always adding new events to our fundraising calendar – visit our website for the most up-to-date list of Challenge Events!

www.braintumourresearch.org/calendar-of-events Please get in touch with Sarah if you would like further information about any of these events, or would like help organising your own – she can’t wait to hear from you!

sarah@braintumourresearch.org 01908 867200 www.braintumourresearch.org Summer 2016 45

T X E N THE : R E T CHAP

Brain Tumour Research relocates to Milton Keynes!

In November 2015, Brain Tumour Research moved from its ‘birthplace’ in the rural village of Padbury, near Buckingham, to Milton Keynes – marking an important milestone in the growth of the charity.

It is thanks to the tireless dedication shown by our supporters, fundraisers and activists that we outgrew our base in the farm at Padbury, home of Chief Executive Sue Farrington Smith and her family, and moved to a larger office in Shenley Wood, Milton Keynes.

The new office is ideally sized to accommodate Brain Tumour Research’s growing team and band of Head Office Volunteers and we are confident that the new location will foster a great many opportunities to engage with a larger community of potential fundraisers and supporters.

On 28th January 2016 we held an Office Open Day, at which we were proudly able to share with attendees what we have achieved.

Informative presentations were given by key figureheads from our Centres of Excellence: Paul Griffiths, Chief Executive of Milton Keynes Professors Geoff Pilkington and Silvia Marino and Dr Nelofer Syed (pictured Chamber of Commerce said: “We are delighted top right with Chairman Wendy Fulcher). This that this important charity has chosen our city gave attendees a direct glimpse of the work that and I hope people across Milton Keynes will be is being funded by Brain Tumour Research in interested in finding out about the great work Portsmouth and London. taking place and potentially consider making Brain Tumour Research their Charity of the Year, as the Chamber has done.”

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We were also pleased to be joined by local MP Iain Stewart, patron Ian Reddington and the Mayor of Milton Keynes Keith McClean, who cut the ribbon to declare the office officially open!

Visitors were invited to explore the space at their leisure and Brain Tumour Research staff were on-hand to talk about how multiple areas within the organisation such as PR, Fundraising and Finance work together to drive forward the development of the charity and make the most of every opportunity.

Also in attendance were Peter and Liz Realf, the parents of Stephen Realf, who passed away in 2014 aged 26. Stephen was the inspiration behind sister Maria setting up the e-petition which gained an astounding 120,000+ signatures, propelling the issues surrounding brain tumour research funding to the forefront of the government agenda.

Having now spent over six months in our new home, we are thankful to have been welcomed to the local area with open arms and only have to glance at the office walls to be reminded of how and why we do what we do.

Adorned with the happily exhausted faces of our fundraisers; the determination of our political activists and the key funding statistics, we are inspired by those who have been with us on the journey so far and look forward to many more joining us in the future!

COULD YOU...

...spare some time to volunteer at our head office? We are always grateful for extra support! www.braintumourresearch.org/volunteer-for-us

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MAKING THE DIFFERENCE Your Monthly Gift Could you make a regular, monthly donation and become an important player in ensuring our vital research continues into the foreseeable future, on a strong and sustainable footing?

Put another way – you would be helping us to plan for the future.

So, whatever you can afford, please take this opportunity to set up a regular, monthly donation – and encourage your friends and family to do the same too. There has never been a better time to help us in this way – as we grow, our team of researchers grows with us and one day, together, we will find a cure.

Leave a Legacy of Hope You can help us rewrite the future of research into brain tumours by leaving a gift in your Will, once you have taken care of your loved-ones. With your generous gift, we can think ahead to a time when the vital work we are funding leads to finding a cure for brain tumours.

If you want to leave a gift to Brain Tumour Research, but have already made a Will, it’s not too late – there are two simple ways to change it. You can either write a new Will which will replace the old one, or add a codicil to the Alternatively, a standing order form is available to download from our website existing Will which specifies the full name www.braintumourresearch.org/donate and registered number of our charity.

To set up a regular donation, give one of our friendly team a call on 01908 867200 or email finance@braintumourresearch.org

Visit www.braintumourresearch.org/ legacy for more information.

We are here to help you with this – so if you would like to leave a legacy of hope please give us a call on 01908 867200 or email finance@supportercare.org

Brain Tumour Research is a member of Remember A Charity, an organisation dedicated to encouraging more people to consider leaving a charitable gift in their Will.

Visit www.rememberacharity.org.uk and search for Brain Tumour Research.

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Celebrate the life of someone special Creating an online Tribute Fund is a positive way to commemorate the life of a loved one whilst contributing to the work of Brain Tumour Research. A Tribute is entirely yours to control – whether you choose to make it a private place of reflection or somewhere that family and friends from across the world can visit.

Setting up your Tribute is simple and only takes a few moments. Once set up, it will be a place where family and friends can leave messages, share memories, light virtual candles and add poignant photos, videos and music in memory.

You can control the privacy settings in every section to ensure nothing will appear that you do not want to see or share.

Your Tribute can also be added to our ‘Forever in our Hearts’ Tribute Garden. This is a place for

individuals, families and friends to share and celebrate the life of their loved one, and to find others who have been affected by a tragic loss due to a brain tumour.

Whilst your Tribute does not have to include a fundraising section, you are also able to collect donations through it which come directly to Brain Tumour Research. In addition, you can also add any personal fundraising or events you have undertaken for visitors to view and take part in.

Find out more about setting up a Brain Tumour Research Tribute Fund by visiting tributes.braintumourresearch.org

Together we will find a cure

Don’t forget – for every £2,740 that you raise, your loved one can be remembered on a Wall of Hope at one of our Centres of Excellence.

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forever

in our hearts From all of us at Brain Tumour Research, our love and thoughts are with all those who inspire us and with everyone who continues to support us in memory of their loved ones and colleagues, year after year.

Adrian Emmott Aileen Meeks Alan Scott Alastair Robertson Alexandra Lloyd Head Alma Cleworth-Piddington Alun Bason Andrew Bio Andrew Hall Andrew Wiles Angela Forster Annaline Lillis Anne Care Anne Rider Anthony Cobern Barbara Greenhalgh Barry Lawton Bernadette Summerson Beryl Jackson Billy Cudmore Brenda Knight Brian Hill Brian Lynch Caroline Thacker Charles Jaynes Christina Stratos Christine Lane Christopher Rose Claire Dennis Clare Lawrence Colin Maxwell Colin Ridehalgh Danny Mitchell

Darren Holmes Darren Walshaw David Fisher David Semple David Shearwood Debra Smith Derek Lambert Desmond Taylor Donald Keir Douglas Gooch Dr Michael Woods Elizabeth Pickford Eric Blundell Ewen Cameron Fabian Aiken Frankie Smith Gavin Pickford Graham Harcourt Graham Horton Graham Taylor Greg Evans Helen Wilcox Hilda Pettyfer Huw Bradwell Ian Metcalfe Ian Tapp Iris Randall Isobel Lyall James Pullen James William Thomas Jason Chandler Jason Hails Jean Thomas

Jeni Fabbri Joanne Adamson John McCarthy John Bourne John Martin John Picken John Shreeve John Slack Kathleen Storey Keith Jeavons Kenneth Garbett Kenneth Harper Kenneth Mitchell Laura Hind Liam Chalmers Luke Foster Margaret Brown Margaret Lewis Martin Eric Lowman Martyn Stanbury Matt Lowther Michael Smith Norman Williams Pamela Ann Warren Patricia Evans Patricia Littlefield Patricia Pratt Paul Fordham Paul Nicholls Pawel Burzynski

Peter Davies Peter Jordan Peter Withinshaw Rachael Edwards Ralph Long Ray Beech Reginald Vaulter Richard Friel Richard Braithwaite Richard Chaplin Richard Webster Rikke Brockstedt Hjortaa Robert Bullard Robert Evensen Robert Young Ron Beresford Ronald Short Roy Underwood Selcuk Arslan Simeon Bennett Stephanie Hewitt Sue Brabbins Sue Garratt Susan Thomas Susie Church Tom McEntee Tommy Elliot Tony Elischer Vera White Vivian (Viv) Hotten

Loved ones remembered here represent in memoriam donations received between 1st November 2015 - 31st March 2016 www.braintumourresearch.org Summer 2016 51

Together we will find a cure.

Our Centre of Excellence Partners

DIVISION OF NEUROPATHOLOGY AND DEPARTMENT OF NEURODEGENERATIVE DISEASE

Our Member Charities

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MARK “BOMBER” LANCASTER TRUST

Get in touch with the Brain Tumour Research team

We love hearing from you! Whether you’d like to discuss fundraising ideas, are interested in becoming a Fundraising Group or want some further information about brain tumours or our research programme; we are only a call, email, tweet or Facebook message away.

www.braintumourresearch.org | Tel: 01908 867200 info@braintumourresearch.org Brain Tumour Research, Suite 3, Shenley Pavilions, Chalkdell Drive, Shenley Wood, Milton Keynes, Bucks MK5 6LB

#Fundingthefight

Registered charity number 1153487 (England and Wales) Company limited by guarantee number 08570737 (England and Wales). Registered Address: Brain Tumour Research, The Business Centre, Padbury Hill Farm, Padbury, Buckingham MK18 2BN.