Believe Spring 2016

Now more than ever before we are getting closer to parity of funding for research into brain tumours.

An update and appeal from our Chief Executive

Since our launch in April 2009 we have campaigned tirelessly for greater funds, challenging the government and larger cancer charities to increase funding into brain tumour research. At the same time we have striven to increase our own capability by raising awareness and building an army of supporters to help us fundraise to support UK brain tumour research.

We are delighted that CancerResearchUK has at last identified brain tumours as one of their strategic priorities and ChildrenwithCancerare allocating £5million over the next three years, including research at our centre in the University of Portsmouth.

In March 2015 we launched our Manifesto calling on the government and larger cancer charities to increase the national spend on brain tumour research to £30 - £35million a year in line with other cancers.

We also called on the UK Government to:

• shine a spotlight on research funding for brain tumours

• facilitate innovation and ring-fence funds for brain tumour research

• incentivise treatment prioritising brain tumour patients

Then in July 2015 we were approached by Maria Lester (née Realf) to help her launch an e-petition – we seized the opportunity; Maria, as sub editor for the Mail on Sunday You Magazine, wrote an article to mark the first anniversary of the loss of her younger brother Stephen Realf to a brain tumour on 18th August 2014.

We shared with her the shocking stats which she highlighted and we started spreading the word through social media. Within a week the e-petition had over 10,000 signatures and the newly formed parliamentary Petitions Committee decided to hold their first ever inquiry into the underfunding for brain tumour research. We attended the launch of the Petitions Committee hearing on 28th October at which Maria and her father Peter Realf were invited to share their moving story and reason for their campaign.

At the same time the Petitions Committee set up a web forum which was open for comment for just 10 days, closing on 30th October. They were overwhelmed at how many of you shared your story in order to highlight the desperate need for more funding. They received 1,104 responses!

On 3rd November, Maria, along with Peter and her Mum, Liz Realf, gave evidence to the Petitions Committee. Later in that same session I gave evidence alongside TheBrainTumour Charity , ChildrenwithCancerand Cancer ResearchUK.

Then on 17th November, 15 respondees were invited to personally share their stories with the Petitions Committee; thank you so much to those of you who gave up your time, I know they were very moved by what they heard.

Finally, on 24th November, Professor Geoff Pilkington, who directs our centre at the University of Portsmouth, gave evidence on behalf of the scientific community alongside Professor Garth Cruikshank, University Hospitals Birmingham NHS Foundation Trust and Professor Tracy Warr, University of Wolverhampton. Karen Kennedy, Director of the National Cancer Research Institute (NCRI) also gave evidence.

Having heard all of the evidence, the Petitions Committee are now writing their report in order to submit to the various select committees and take forward. To keep up to date and watch the live recordings of the evidence session go to www.parliament.uk/business/committees/ committees-a-z/commons-select/petitionscommittee/inquiries/parliament-2015/funding-

Peter Realf and Maria Lester outside Parliament with Sue Farrington Smith

The e-petition is still open for signatures and as I write this, over 40,000 of you have signed. Thank you so much. We need this to get to over 100,000 signatures by the beginning of February 2016 if we are to encourage a debate in the House of Commons. I urge you to engage all of your family, friends, organisations and supporters to get behind this and sign it. The brain tumour community needs to get behind our cause as together we will find a cure.

This is all very exciting, but we mustn’t be complacent and it is only the beginning of the next journey on our path to finding a cure.

In 2014 only 15% of the National Spend (£507m) on cancer came from the government’s Medical Research Council. The UK is dependent on you, me and the general public to support cancer research charities in order to fund research into cancer, which now affects one in two people during their lifetime.

BrainTumourResearchrelies on you, your organisations and the general public to donate to specific brain tumour charities or put pressure on other cancer charities that you give your money to in order to increase the amount allocated to brain tumour research. It’s a complicated landscape and here at BrainTumourResearchwe remain true to our strategy to provide continuous and sustainable research into brain tumours.

The Petitions Committee Launch L-R Sue Farrington Smith, Rebecca Harris MP, Helen Jones MP, Maria Lester, John Bercow MP, Peter Realf & Christopher Grayling MP

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.

THIS IS UNACCEPTABLE!

We are striving to fund a network of seven dedicated research centres whilst challenging the government and larger cancer charities to invest more in brain tumour research.

Help us fund the fight.

Together we will find a cure. Brain tumours kill more children and adults under the age of 40 than any other cancer

Together we will find a cure

In September 2015, we sent our very first weekly e-news bulletin! We think it’s important to keep you updated on the progress we are making with your help and so if you aren’t already receiving these, please send your email address to sharon@braintumourresearch.org and we will add you to the list. If you think you should be receiving them but haven’t, please check your Junk mail folder – if they have landed in there you can ensure that they don’t in the future by choosing the ‘Not Junk’ and ‘Never Block Sender’ options. If you need any help, please don’t hesitate to get in touch.

Updates from our Fantastic

Brain Tumour Research is supported by a network of amazing and dedicated Fundraising Groups. Through their loyal fundraising and awareness raising, these incredible people play a pivotal role in helping to raise funds for our Centres of Excellence. Here is just a snapshot of what some of them have

Loubob’s Legacy

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

M.I.N.E

Mel Hennessey was diagnosed with a Grade 1 meningioma in 2009, only a short time after giving birth to her daughter, Daisy. Mel’s battle is ongoing and at the time of writing, she is fighting three brain tumours.

Since their arrival in 2014, Loubob’sLegacy have taken the fundraising world by storm! Ambitious and passionate, Aylee, husband Gavin and the fondly named ‘LouKrew’, have organised an incredibly diverse range of fundraising activities... In just over one year, Loubob’sLegacyraised a jaw-dropping £32,000 and priceless amounts of awareness in memory of their beloved son and friend, Louis Kenney, who died at the age of 13 from a brain tumour.

The LouKrew are truly fearless; facing 120mph speeds on Europe’s longest zip wire and cycling 80 miles in a day from Leicester to Skegness.

They also hosted some very exciting events including a brilliant Bhangra Extravaganza, ‘Man Cave’ Fun Day and their first-ever ‘Loustock’, which featured memorable musical performances from the Food Fighterz and DJ Blink!

We can’t wait to see what Loubob’sLegacypull out of their hats in 2016!

Determined to help advance research and raise awareness, Mel established the fundraising M.I.N.E(Money Is Needed Everyday). Support for M.I.N.E has continued to grow, with a dedicated group of fundraisers frequently undertaking gruelling physical challenges to raise funds. Indeed in 2015, Mel’s husband Wayne completed four events: a 170 mile Coast to Coast Bike Ride, the Great North Run,

Fundraising Groups

M.I.N.E ’s total raised stands at almost £25,000 – a staggering achievement!

Mel also helps spread awareness by bravely sharing her personal stories via her Facebook page. From milestone moments in her daughter’s life, to her fears over the next set of scan results; the page has become a support in itself for many and a space in which those affected can take strength from one another. www.facebook.com/melaniehennessy71

Mel and her family are a truly incredible force in supporting BrainTumourResearchand we are honoured and humbled to have their support.

HELP US

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

Head 1st for Brain Tumours

Nicole Phillips (nee Taylor, aka Nicole Witts) was first diagnosed with a brain tumour in 2008; this was successfully removed, but in 2014 she and her family were devastated to learn that it had come back. Thankfully, the results of her latest scan have been positive, allowing room for optimism.

18 months she has got married; attended the launch of our Centre of Excellence at Plymouth University; taken a starring role at our special Wear A Hat Day photo-shoot and been a part of numerous fundraisers organised by friends and supporters of Head1st

Nicole has refused to let this stop her from banging the drum for Brain Tumour Research.

Head1st is one of our long-standing and much-cherished fundraising groups for which Nicole and her friends are continually organising events and fundraising opportunities. This is in addition to regularly attending our lobbying events at Westminster.

In November 2014, Nicole fulfilled her ambition to plant a tree dedicated to Brain TumourResearch. The tree will grow and thrive as a symbol of the fight against brain tumours and as a tribute to the work of everyone who continues to research in pursuit of a cure for this devastating disease.

Nicole is very much part of the BrainTumour Researchfamily and we hope that her strength, resolve and positive outlook will continue to inspire others.

Together we will find a cure

the Redcar Half Marathon and Tough Mudder –a real Fighting Force hero!

The District Line Cycle Challenge

MAZARS 400km BIKE CHALLENGE

Staff at Mazars’ Leeds office were stunned when two of their close colleagues passed away from brain tumours and related illnesses. They were moved to undertake an act of remembrance in a bid to raise funds for vital research.

In July 2015, David Blythe, Emma Thornhill and Ashley Barraclough –all of whom had very little cycling experience prior to their training –took on a four-day cycling challenge, starting in Southport, Merseyside and ending in Hornsea, East Yorkshire.

The team’s escapades captured the hearts of many, with donations pouring in for the team before, during and after the challenge allowing them to increase their target twice, raising an astonishing £30,000!

BrainTumourResearchHead of Community Fundraising, Carol Robertson said this of the team: “David,AshleyandEmmahavedone anamazingjob,bothinfundraisingandin thechallenge;allwerenon-cyclistsbefore embarkingontrainingfortheevent. Atthe endofthischallenge,theteamhadfunded almost11daysofresearch,whichisan incredibleresult,especiallyastheiroriginal targetwas£12,000.Anawesomeeffort andanabsolutepleasuregettingtoknow theseguys.”

You can read all about the team’s epic journey on their wonderful blog: http://fredblythe.wix.com/400km

On Sunday 23rd August 2015, a dedicated team of London Underground staff took on the District Line Cycle Challenge – a 74 mile cross-London cycle inspired by former colleague Steve Lloyd’s brain tumour battle. Steve passed away just one month later in September 2015.

Husband and father-of-two, Steve was first diagnosed with an aggressive glioblastoma multiforme (GBM) in 2008. The tumour was high-grade and growing, and the family knew from day one that surgery was not an option; Steve’s condition was terminal.

“Tohearthatdiagnosisiscompletelyshocking. Itreallyislikehavingarugpulledfromunder you...Ourtimetogetherwasgoingtobeeven morepreciousthaneverbefore,sowestarted doingthingstocreatememorieswhichwecould cherishinthefutureandwhichwouldstaywith thegirlsforever.”said Steve’s wife, Angela.

In October 2014, Steve was told he had around 12 months to live and was forced to retire from work shortly afterwards due to his rapidly deteriorating health. It was then that his work colleagues at Transport for London (TFL) decided to take action.

The District Line Cycle Challenge saw five teams of cyclists taking in all 61 stations along the District line – all on Santander bikes (Boris Bikes)!

Gratefully, Steve was able to be at the Tower Hill finish line greeting his colleagues and was even joined by West Ham full-back Carl Jenkinson, owing to his life-long support of the club. In the weeks prior to the event, promotional posters adorned all District Line stations and helped raise great awareness and an amazing £433 via text donations.

The event raised an incredible total of over £23,000!

A huge thank you to all who were a part of making this event such a huge success, and therefore ensuring that Steve will not be forgotten.

‘ON YER BIKE‘ FOR BRAIN TUMOUR RESEARCH

We are proud to announce a fantastic new nationwide challenge for 2016! On Yer Bike for Brain Tumour Research is a national spinnathon event, taking place at the end of February 2016 to help launch Brain Tumour Awareness Month in March.

Can you lead teams for us or would you like to join a team? We need On Yer Bike Fundraising Champions to organise teams of six (or more) participants at a minimum of 35 locations across the UK; we’d love to hear from anyone who’d like to get involved. Please contact Carol at Brain Tumour Research on 07817 878407 or email carol@braintumourresearch.org to express your interest.

Leading budget fitness gym chain Xercise4Less – known as ‘the people’s gym’ – is the national sponsor for On Yer Bike 2016. They will be holding epic 12-hour static bike fitness challenges across 35 branches in the UK over the last weekend in February. Each gym will set a target of sponsoring one day of research at £2,740 –but will aim to beat it of course! That means Xercise4Less will set a national target of over £95,000 to fund research. That’s got to be worth getting ‘on yer bike’ for!

The original On Yer Bike event was organised by passionate supporters Paul and Jen Halfpenny from Glossop in Derbyshire. Paul was diagnosed with a brain tumour in 2010 and immediately started chemo and radiotherapy treatment. This was initially successful and thanks also to his inspiring and unwavering positivity, Paul continued to live a stable, happy life for another three years.

In 2013 however, the chemotherapy regime was no longer effective and Paul sadly passed away on 20th June 2014 after what was described as “a heroic four-and-a-half-year battle” against a brain tumour.

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.

On Yer Bike events can be held in any gym or fitness centre. Please contact us to find out more.

THE LONESOME ROADSHOW: DUST-STORMING ACROSS AFRICA

Students Oscar Cowling and Justin Langen have conquered an epic challenge together: driving 13,000 miles across some of the world’s most inhospitable and dangerous lands to raise funds and awareness for Brain Tumour Research.

Oscar was just 10 years old when his father, Alastair Cowling – originally from Farnham in Surrey and who ran a loft conversion company in London – was diagnosed with a glioblastoma brain tumour and passed away aged 46.

Oscar said: “Iwantedtodosomethingin memoryofmydadandonlybydoingsome researchdidIdiscoverthesheermagnitude

ofthisdiseaseandthedamageitcauses. FromthereIwasevenmoremotivatedtodo somethingtohelp.”

The intrepid pair travelled through 19 countries in 83 days, surviving vicious sandstorms and nerve-racking police checkpoints.

Justin commented: “Theworstpartofthetrip, apartfromrunningoutofwaterinthemiddle ofthedesertinSudan,washavinga40-tonne truckcrashingintothebackofus!”

On August 28th, they tweeted the triumphant achievement: “Finished! 22,000kmlaterwehitthesouthernmosttipof Africa!Pleasekeepdonationscoming!“

The effort has raised almost £17,000 for the cause to date. You can read the full account of their challenge on their blog thelonesomeroadshow.com. And their fundraising page is still open for donations:

Ascent to the roof of the world in honour of Nigel

The wife and son of a former rocket scientist who died of brain cancer completed an amazing, breath-stealingly beautiful fundraising trek across the Himalayas.

The adventurous trip was inspired by the loss of Nigel Barber to a brain tumour at the age of 58. Nigel became ill just a week before he and his wife Philippa were due to fly to India for a holiday.

Philippa said: “NigelandIhadbeen planningtheholidayofalifetimewhen,outof theblue,hehadamajorseizure.Hewastaken toSouthamptonGeneralHospitalwherehe wasgivenaCATscan.Therewasnopreparation fortheworstmomentofmylifewhichwas tofollow.

“Theneurosurgeonputthescandowninfront ofmeandIcouldseestraightawaytherewasa hugemassinsidemyhusband’sbrain.Itwasa nightmare,whichduringthecourseofjustone dayescalatedoutofnowhere.

“Nigelhadsurgery,radiotherapyand chemotherapy.Hewassobraveandfoughtthe illnesshardforovertwoyears.”

Nigel worked on building satellites at Airbus Space and Defence Ltd in Portsmouth. He sadly passed away in June 2013.

After he died, Philippa decided she should go to India anyway to do something in Nigel’s memory: “Iwantedtodemonstratethatalthoughabrain tumourkilledmyhusbandithasn’tkilledusor ourspirit.WewillberaisingmoneyforBrain TumourResearchasIwantsomerealgoodto comeoutofwhathashappenedtome.Ishould havebeentravellingwithmyhusbandbut, instead,Iwillbetravellingwithoneofoursons, Jamie,supportedbyourothersonTomwhois unabletojoinusbecauseofworkcommitments, andwewillallberememberingNigel.”

Philippa and Jamie completed their dizzying challenge in September 2015, walking through mountainous terrain and staying in remote lodges with no electricity, fresh water supply or toilets! Their challenge raised over £3,000 to help fund long-term research at our Centre of Excellence at the University of Portsmouth.

Walking A New Path to Find A Cure

Peter Jordan, a former emergency services worker who lost his father to a brain tumour has found a new career path in joining BrainTumour Research, motivated by a passion to help others affected by this terrible disease.

Peter’s career change was prompted by the death of his father Jim to a glioblastoma multiforme, the most aggressive common form of brain tumour.

“Duringmy27-yearcareerwithSouth WesternAmbulanceService,Iattended traincrashes,trafficaccidents,helped thewalkingwoundedanddeliveredfive babies.IamproudtosaythatIsavedlives andIwouldbewithpeopleintheirhomes astheywentthroughverydifficulttimes. Despiteallofthis,nothingpreparedme forwhathappenedtomyfather.Hisbrain tumourwasinoperableandrobbedhim ofhispersonalityandhisco-ordination. Anaturallygentleman,hebecamevery aggressiveandthenhelpless.Iwaswith himinhospitalforhislastdays.Ispent almostthreedecadeshelpingpeoplebut therewasabsolutelynothingIcoulddofor myowndad.”

Peter covers the South West region of England, working closely with the BrainTumourResearch Centre of Excellence at Plymouth University, where a team of world-class scientists are focused on pioneering research into low-grade brain tumours.

Inspired by a favourite personal walking route, Peter’s first challenge was to set up the Teign and Turrets Walk for BrainTumourResearch which took place on 1st November 2015.

He was joined by 15 walkers on the day, including a group of seven supporters from Benbow shop fitters in Newton Abbot, Devon, who took part in memory of his father Jim, who worked there for 30 years.

Another group of five joined the walk in support of Judith McMahon, who took part in the Brain TumourResearchCanal Walk in September 2015. Judith placed a tile on the Wall of Hope at our Centre of Excellence in Plymouth University earlier this year in memory of her husband John who had worked at the University for 16 years before dying from a brain tumour in June 2014.

Peter was very pleased with how the day went: “Everybodysaiditwasafantasticwalkwith stunningviewsandwasverywellorganised. ThestopsatCastleDrogoandtheFingleBridge Innwereverymuchwelcomed.Wewereblessed withabeautifuldayandeveryonesaidthey wouldwalkforusnextyearandtelltheirfriends to come.

“Thebestcommentofthedaywasfromone walker,whoselargedograntowardsavery smalldog,andthewalkerwasheardtosay ‘comeawayfromher;she’sasmalldogand notlunch!’”

Peter is a tireless fundraiser and has already signed up to organise and participate in numerous events in 2016 – If you’d like to join him, do some volunteering, take on your own challenge or support BrainTumourResearchin the South West in any other way, please email peter@braintumourresearch.orgor go to www.braintumourresearch.org/volunteer

Together we will find a cure

Record numbers Conquer it Together at Grand Union Canal Walk!

Every September we invite our supporters to ‘Conquer it Together’ on our annual Grand Union Canal Walk. The walk’s popularity has grown rapidly since the first event in 2012, and on 26th September 2015, we were joined by an unprecedented number of supporters! We were thrilled to welcome over 90 participants on the day, eager to enjoy the good company and glorious sunshine, whilst raising vital funds for research.

Participants of all ages and abilities took on the 11-mile distance – we were even joined by a few four-legged friends! Fun and laughs were had by all along the trail, and the children received special BrainTumourResearchmedals for their amazing achievement.

‘TeamLou’ were the largest presence at the event, with 26 enthusiastic members united in their mission to raise as much as possible in memory of Caroline ‘Lou’ Taylor. Loving wife and mother to three sons, Caroline (known to family and friends as Lou) passed away on 2nd August 2015, aged 61, less than a fortnight before her youngest son, Carl, was to be married. Her funeral was

held two days before the wedding, and she was dressed in the outfit she had planned to wear. Understandably, her family were heartbroken and decided they had to do something immediately in Lou’s memory.

Ranging in age from seven to 73 years old, TeamLouwere a fantastic and energetic presence at the canal walk and raised a phenomenal £5,083 for brain tumour research, in the hope that families in the future will not have to endure the painful loss that they have.

Our warmest thanks to TeamLouand all other participants of the Grand Union Canal Walk 2015, many of whom were inspired by their own brain tumour experiences.

We hope to see you at this year’s event on 24th September!

All miles walked at the Grand Union Canal Walk were donated to IBTA’s Walk Around the World for Brain Tumours. To find out more visit theIBTA.org

Could you organise a Canal Walk near you?

We appreciate that many of you are not within rambling distance of Buckinghamshire – so why not organise your own Canal Walk? What could be better than gathering a group of friends for some fresh-air and feel-good fundraising in the great outdoors? There are so many picturesque canal-ways all over the UK, yet to be conquered by Brain Tumour Research supporters!

Please get in touch with our Head of Community Fundraising, Carol, if you are interested and she will be more than happy to help you:

carol@braintumourresearch.org

STEP BY STEP… CLOSER TO A CURE

Every year, hundreds of people take part in a range of incredible running events to raise funds for Brain Tumour Research – we call them our Fighting Force!

These pages highlight just a few of the incredible stories and physical achievements of our phenomenal supporters. We wish we could feature them all, but we simply wouldn’t have the space!

We’d like to thank each and every one who has undertaken a challenge for BrainTumourResearch wonderful generosity and sheer determination to bring us closer to a cure for brain tumours. It is with your unquestionable dedication that we are now over half way to achieving our goal of funding seven dedicated research centres in the UK.

Endurance challenges don’t come much tougher than Tough Mudder: a 10 to 12-mile obstacle course designed to test the limits of the physical and mental stamina of its participants. So, having deciding that it was the year “to do crazy things”, this was the obvious choice of challenge for the brilliant Gayle Clarke and husband Barry.

Gayle decided to raise money for BrainTumour Researchafter her mother Janet was diagnosed with a brain tumour in 2014. Thankfully, 99% of the tumour was removed successfully.

The formidable team had set their sights on raising £2,740 to fund one day of research; they soon smashed this target, raising an astonishing total of £4,530!

High-fives all round!

Justin was first moved to get involved with BrainTumourResearch when his neighbour and good friend, Simon Holland was diagnosed with a brain tumour. Justin ran the Paris Marathon in April 2015 with just two weeks’ notice – and completed it in a very respectable 3 hours 46 minutes!

Having raised an awesome £6,187 for vital research, Justin is planning to build on his fundraising and fitness success at the London Marathon in April 2016.

Jane’s twin brother Tim was diagnosed with a brain tumour in September 2014. On learning of the issues surrounding brain tumour research funding, she and their incredible family decided to take action.

“Peoplehavebeenamazinglykind sinceTimwasdiagnosedandboyhavemy eyesbeenopenedtohowlittlefundingisgiven tothiscauseandhowlimitedtheoptionsare forpeoplesufferingfrombraintumours.”

Tim’s niece Lianne, Lianne’s husband Alec, along with their best friends Tracy and John Buckley ran the Chester Marathon in October 2015, hoping to raise £300. Thanks to an outpouring of love and support from friends,

Gayle Clarke - Tough Mudder

Justin O’Shea - Paris Marathon

Jane Cavaney - Chester Marathon

Marcus Cronin120mile Portugal Coast Run

Marcus Cronin lost his beloved wife Caroline to a brain tumour in October 2013, just months after she gave birth to their daughter, Florence. In October 2015, Marcus commemorated the second anniversary of Caroline’s death with an epic 120-mile running challenge along the Rota Vicentina, which links up the first place they holidayed together, with the last.

Caroline was a marine biologist and Marcus chose to split the money raised in her memory between BrainTumourResearchand the Marine ConservationSociety . We are honoured that Marcus chose to fundraise for our cause in this deeply personal way, raising a phenomenal £1,784.

You can read Marcus and Caroline’s story on our website: www.braintumouresearch.org/in-our-hearts

Mark raised over £11,000

MARK McCAWLEY’S KART RACE

Our supporters never fail to surprise us with the amazing things they do to help raise funds and awareness for brain tumour research... In 2015, Mark McCawley went the ‘extra mile’ and organised his second awesomely ground-shaking event!

On 19th July 2015, eighteen teams of drivers, including top names from the world of Motorsport, battled it out during a nail-biting three-hour endurance Kart Race in Milton Keynes. Mark, who is employed by world-leading motorsport and technology business Prodrive, came up with the idea to use his motorsport connections to raise money for this much underfunded disease: “In 2005 the world of rallying lost a hero in Richard Burns –famous for being the first Englishman to win the World Rally Championship in 2001. He died from a brain tumour four years to the day since winning the coveted title, having been diagnosed after passing out at the wheel of his road car on the way to the Wales Rally GB in 2003. Richard was well-known to us at Prodrive as for a number of years he drove for Subaru, one of the

racing teams which relies on Prodrive technology.”

Team ‘Cater Ham Burger Van’ with ex-British GT Champion Jon Barnes took the prized top spot on the podium with ‘Juxta MVC’ in second place. Le Mans 2015 winner, Nick Tandy from Bedford along with his JTR team (‘Joe Tandy Racing’) had to settle for third place.

The event held at Daytona included lots of fun and entertainment for all and raised over £11,000! That’s four days of research funded at just one event!

Carol Robertson, Head of Community Fundraising at BrainTumourResearch, said: “Brain tumours kill more children and adults under the age of 40 than any other cancer, yet research to find more effective treatments and ultimately

a cure is woefully underfunded. We rely on our supporters to help raise awareness of this devastating disease as well as helping to fund desperately needed research. We would like to thank Mark and his friends and colleagues from the world of Motorsport for raising this incredible sum of money.”

Gyms

Spectacular Support from Beachborough School

Beachborough School in Buckinghamshire has been fundraising and raising awareness for Brain Tumour Research for over five years – their commitment and drive to make a difference has resulted in almost £15,000 raised for vital research!

The staff at the school are absolutely committed in their aim to encourage a fundraising culture amongst their students; contributing much time and resource in helping support various good causes. So when teacher Sally Gross’ niece, Maisie, was diagnosed with a brain tumour in 2007, she rallied staff, children and parents to help raise money to support research into the disease. Thankfully, Maisie’s tumour was successfully removed and she is now living a full and happy life with her family in Scotland.

The school have thrown all their creativity behind the cause and Sally is incredibly proud of all that the children have achieved: “Forthepastfiveyears wehavewornhatsonWearAHatDay,wehave boughtbadges,wristbandsandsoldlotsand lotsofcupcakestohelpraisethousands!Our wholeschool‘SpringHatParades’arealways greatfunandtheyarenowatraditionhereat BeachboroughSchool.

“Weholdcakesales,teaparties,musical concerts,denbuildingcompetitions,sell

personalisedclothingandevenchangeour schoolgroundsintoacampsiteandholdagiant camp-outsleepover!”

For Sally’s daughter Millie, the ambition and drive to help fund brain tumour research continued even after she left Beachborough to start at secondary school. So in 2015, Millie and friend Bessy undertook a swimming challenge of their own invention – 100 gruelling lengths of the local pool! The duo made posters, sponsor sheets and trained hard for the event. Indeed, the girls’ incredible effort raised a phenomenal £725! We were pleased to welcome them a few weeks later at ResearchHQ, alongside Sally, Vanessa and Maisie, so that they could hand their cheque directly to Chief Executive Sue Farrington Smith.

Sue said: “ThesupportfromSally,Vanessa, theirfamilies,andthechildrenandstaffof BeachboroughSchoolhasbeenincredible. Thededicationtheyhaveshowntofunding braintumourresearchhasresultedinover fivedaysoffundingforvitalresearchinto thebiggestcancerkillerofchildrenand adultsundertheageof40.Thisisin additiontotheincredibleawarenessthat VanessaandMaisiecontinuetospread bysharingtheirstorywiththemedia.

almost £15,000 raised for vital research!

Fluff Strong’s moving birthday tribute.

An incredible £1,400 was raised!

When Fluff Strong celebrated her 100th birthday on 1st February 2015, she made sure that her late son John was also remembered on her special day.

Fluff – who gained her nickname as a baby – is an incredibly active 100-year-old, using an iPad gifted to her by her grandsons to keep in touch with her extended family via Skype and Facetime!

Her beloved son, John, passed away from an aggressive brain tumour eight years ago, just 12 days before his 65th birthday. She had this to say of him:

“John was a wonderful son and a brilliant physicist – a Professor at London University and well-known to the nuclear physicists at Cern, outside Geneva. It seemed so cruel that someone with such an amazing mind should end up with brain cancer. When he was diagnosed I hoped that it would be operable, so to learn that it wasn’t was just devastating. I kept hoping for a miracle right up to the end.”

Fluff marked her special day with family and friends at a meal at The Angel restaurant in her hometown of Long Crendon, Buckinghamshire. Generously, she asked that instead of gifts, the guests in attendance would make a donation to BrainTumour Research, in memory of John.

An incredible £1,400 was raised through Fluff’s 100th birthday celebrations and we were honoured when she and her daughter-

in-law, John’s widow, Carol, accepted our invitation for coffee and cake at Brain TumourResearchHQ. Fluff’s tenacity and character was an inspiration to all she met. Chief Executive of BrainTumourResearch, Sue Farrington Smith said:

“It’snoteverydaywegettowelcomea wonderful100yearoldladythroughour doors.Unfortunatelyfartoooftenwemeet parentswho,likeMrsStrong,haveoutlived theirchildren.16,000familiesfacethe newseachyearthatalovedonehasbeen diagnosedwithabraintumour,andthe numbersofpeopledyingfromthistypeof cancerarerising.”

We would like to thank all who made a donation in memory of John on Fluff’s 100th birthday. For helping us to fund vital research to find a cure for this devastating disease.

ELEVEN INCHES CLOSER TO A CURE

Five-year-old Amelia Baker, from the aptly named Wigston, decided to chop off a full 11 inches of her gorgeous long blonde hair in order to raise desperately needed funds for research into the biggest cancer killer of children and adults under the age of 40.

The fundraising campaign was inspired by Loubob’sLegacy , a Leicestershire-based group collecting for BrainTumourResearchin memory of Louis Kenney, who died in early 2014 from a brain tumour, aged 13.

Amelia’s mum Sarah set up a JustGiving page so Amelia could be sponsored to raise money. She set the target at £100, expecting just pocket money donations from Amelia’s friends at St John Fisher primary school in Wigston. But donations flooded in from Amelia’s parents’ friends and work colleagues and Amelia’s teachers.

Sarah said: “Therewasadonationofabout£80 thatcameinfromAmelia’steachersafterthe storywasfirstinthelocalpaperthattookitpast the£1,000mark.She’slikeacelebritynow.The dayafterthestorywasinthenews,wearrived atschoolandalittleboyranuptoherandsaid, ‘Amelia,Amelia,youwereinthepaper!

An inspirational Performance

A Christmas concert held in memory of a mother and daughter raised over £1,500 to help fund the fight against brain tumours.

The event, held at Bush Hills Park Bowls Club in Enfield, North London, in December 2015, saw Mel Field from nearby Woodford take part in a group performance as a tribute to her eight-year-old daughter Molly, who died from an incurable tumour in 2010. Mel is a champion community fundraiser, having raised tens of thousands of pounds for various charitable causes.

The concert, performed by musical theatre group Performance, was organised by Allison Lochhead, whose mother Sylvia Horder died from a brain tumour in 2002.

Allison said: “Mymumwasdiagnosedwith agradeIVgliomabraintumourinMay 2001andsadlypassedawayinJuly2002 andtheninMarch2010,eight-yearold Mollywasdiagnosedwithadiffusebrain tumourwhichwasinoperableandincurable andshediedonly6monthslater.Itis unbearabletothinkthat1in50peoplewho dieundertheageof60diefromabrain tumour,yetthisareahasreceivedjust1%of thenationalspendoncancerresearch.”

Over 120 people attended the event and the musical programme included Christmas Number Ones plus a solo from Allison’s nine-year-old son Henry, who also performed a comedy routine with Molly’s sister, Isabella, also aged nine.

“Everyoneattheschoolisreallyproudofherand Ithinkit’samazinghowmuchhasbeenraised.”

Amelia’s hair was cut on 31st January 2015 by her aunt, Hayley Smith, who is a hairdresser at the 8990 Hair Boutique, in Granby Street, Leicester, where staff and customers also made donations to the fund.

Amelia said she was very happy with her new hairdo: “I like it. It’s shorter so it’s much easier to brush.”

The discarded locks were donated to the Little PrincessTrustto be made into a wig for a child who has lost hair through cancer.

Concert raised over £1,500

Amelia raised over £1,000

Dinner on the Rocks

Assembled in a cave in Dorset, dozens of guests enjoyed a unique fundraising supper for BrainTumourResearch

The remarkable location, set into the cliffside overlooking the Purbeck coast, normally with no electricity or running water, was transformed into an exclusive restaurant experience for one night courtesy of renowned chef Allegra McEvedy, MBE.

The event was inspired by Ben Whitehouse who was diagnosed with a brain tumour in 2010 and passed away three years later, aged just 34.

Ben and Allegra were life-long friends. They grew up on the same road in Hammersmith, London and stayed in touch after he moved to Dorset. Ben’s beloved wife Rachel helped to plan and host the event and, as an accomplished pâtissière herself, contributed to the culinary feast on the night.

Despite the challenges that came with his brain tumour diagnosis, Ben remained determined to make the most of the time he had left with Rachel.

“Wehadbeenmarriedforjust15months whenBendied.Ineverimaginedthatafter suchashorttimeIwouldbeonmyown. Lifeisstillhardbutatleastwehadthe chancetosaygoodbye.”

Rachel was determined that the event should be a positive experience to celebrate the life of her partner: “Asmallideaafewmonths agocametorealitywithevengreater successthanIhaddaredhopefor,creating aspectacularevening.Theamazing generosityofboththosethatbought tickets,andthosethatcouldn’tcomefor theeveningwasremarkable,andallinthe memoryofmydarlinghusbandBen.

“Peoplewereamazedbythesiteofthe candlelitcave,withtheseacrashingintothe rocksbelow,andtheburningNorwegian candlesoutside.

“Thechefsdidanexcellentjob,andfinished offtheoccasionwithaninteractivepudding completewithadustingoficingsugar fromanoverheadfishingnet!Inall,a spectaculareventandoneIhopethatcan berepeated!”

Diners bid for a range of attractive lots in the Auction of Promises with many substantial prizes, all generously donated to maximise fundraising efforts on the night. The total raised through this event has reached over £11,000. That’s a generous tip for BrainTumourResearch!

Ben and Rachel Whitehouse

Sophie Peters Hosts for Hope!

“IwalkedpastSpecsaversopticiansand therewasamanoutsideinvitingpeoplein foraneyetest.Astheyhadanappointment straightawayIwentin.IexplainedthatI hadbeenhavingtheseheadachesandthe opticiandidsometests.Iwastoldthatmy opticnerveappearedtobehaemorrhaging andswollenandthatIneededtogotothe hospitalstraightaway.”

Sophie raised a fantastic £734

“Thereisnofundingforthestudentsthat we’retrainingtotakeourplacewhenwe stepback;theywouldliketostayinthis area,butpositionsoutthereareveryfew andfarbetween,becauseofthelackof funding.”

It was around Christmastime 2012 when Sophie, now 26, began suffering with crippling headaches. Following a year of agonising pain and repeated visits to her GP, it was after a chance trip to the optician that she was diagnosed with a brain tumour.

A CT scan revealed a low-grade meningioma in Sophie’s brain. Thankfully, this was removed without consequence, and just before it could have caused further health implications. Although in good health now, she lives with regular nightmares that the tumour will come back.

However, once Sophie learnt how desperately underfunded research is and how little is known about brain tumours, she decided to take action. Sophie has shared her story with the local press and has even been interviewed on BBC Radio Solent, alongside Portsmouth-based neuroscientist, Helen Fillmore, who addressed the difficulty of finding students to continue their vital work:

In June 2015, Sophie held a Host for Hope event at Woodlands Café in Itchen Valley Country Park, where she works part-time. The day was a great success, and Sophie has raised a fantastic £734 to date for BrainTumourResearch!

“Itissoimportantthatwefindoutmore aboutbraintumours.Idon’twantanyone elsetogothroughwhatIhaveandwould adviseanyonewho,likeme,suffersfrom severeheadachestopersistuntiltheyhave adiagnosisthattheycanbelieve.”

We’d like to thank Sophie for using her uplifting spirit and positive outlook to increase brain tumour awareness and help us on our way to funding seven research Centres of Excellence in the UK.

Little Hatters at Thomas Hickman School!

The children at Thomas Hickman School in Aylesbury, Buckinghamshire truly got into the spirit of Wear A Hat Day in 2015; making their own amazing Easter hats and taking part in a magnificent parade to show them off around the school playground!

Pupils of all ages took part, lovingly crafting their creations from items such as feathers, paper plates, toilet rolls and glitter! After the parade, a winner for the wackiest, boldest and most creative design was picked from each class and presented with a prize.

The children and staff were also joined by residents from Lewin Care Home, (situated across the road from the school) who enjoyed the festivities from the side of the playground proudly wearing their own Easter-themed creations!

Ross and Tash from BrainTumourResearch were thrilled to be able to attend the parade during their whistle-stop tour of events in the Buckinghamshire area. Ross said this of the day:

“WelovedgettingintothespiritofEasteraswell asWearAHatDay!Thechildren’shats werefantastic,someweresoelaborateand Idefinitelywouldn’thavebeenabletochoose awinner!Itreallyshowsthateveryonecan takepartinWearAHatDay–youjustneeda littleinspiration.”

Also in attendance was local resident and charity supporter, Helen Wilson. Helen lost her father, David Palfrey, to a brain tumour just six weeks after diagnosis in 2012 and has been actively raising funds and awareness for BrainTumour Researchever since. In 2014, Helen leant her unique support by adorning her Chrysler Cruiser (previously David’s) with a behatted Marilyn Monroe graphic!

“Thewholethingcameaboutbecausemydad lovedtohavealaugh.Lifewasabouthavinga goodtimeforhim.Marilynwillalwaysremain onthecarashomagetoourDad,wholovedto dance,cruiseandhavefun.”

The children and staff at Thomas Hickman School raised a phenomenal £291 in 2015 and Helen’s fundraising total stands at over £1,200! Together they are funding the fight – With every penny they raise going towards vital, life-saving research at our Centres of Excellence.

HATS OFF TO JOEY!

Support for Wear A Hat Day comes from all walks of life; the simplicity and fun of the campaign means that ANYONE can take part, and we relish the diversity of stories that come from our amazing supporters...

In 2015, we were honoured and humbled when the team behind the multi award-winning stage show War Horse paid special tribute to a much-loved colleague, Vic Hamilton, on the eve of Wear A Hat Day. An employee for more than a decade in the National Theatre’s transport department, 60-year-old Vic lost his battle with a brain tumour just weeks before the campaign.

The puppets, cast and crew of War Horse were well known to Vic as his responsibilities included the collection and delivery of props, costume, lighting and stages for War Horse and many other productions.

It was therefore a fitting tribute for Joey the War Horse to be joined by the entire cast on stage at the show’s New London Theatre home for a truly

hattastic photocall. All got into the spirit of the occasion and no-one was exempt, even Harold the Goose – who rather ‘stole the show’ with his Easter bonnet!

Liz Murray, Costume & Furniture Hire & Transport Manager at the National Theatre, said: “Vicwas awell-knownfigurewithagreatsenseof humour,alwayshavingajokeorastorytotell. Hehadacaringnatureandwasverymucha familymanwhowouldproudlyshowoffphotos ofhistwograndsonsatanygivenchance.

Hewastakensosuddenlyfromusandweare proudtobeabletopaythistributetohimwhile helpingtoraiseawarenessofthisterribledisease.”

Also taking part in Wear A Hat Day with photocalls on stage at the National Theatre throughout Brain Tumour Awareness Month, were the cast of Behind the Beautiful Forevers, Man and Superman, Treasure Island, Rules for Living, and Dara.

Fantastic awareness raised through the theatre press and on social media resulted in increased text donations and ultimately helped us achieve our most successful Wear A Hat Day ever! Our warmest thanks to all who offered their support to BrainTumourResearchin memory of a truly remarkable man.

THINKING CAPS ON!

TH MARCH

WEAR A HAT DAY EVENT IDEAS!

A - Ask everyone to wear a hatSimple!

B - Best hat competition

C - Coffee morning / Cocktail party

D - Design your own hat

E - Easter bonnet parade (Particularly popular at school!)

F - Fashion show with hats

G - Get in the grooveA hatty dance-off!

- Hat throwing contest - Iced hats! Decorate your cakes, cookies, biscuits, desserts, puddings… where were we?

P - Get your pets involved, we have many animals taking part each year; from dogs and cats to tortoises and tigers! (But please don’t distress any animals)

Q - Hat Quiz!

(Available to download from the Hatter’s Workshop)

R - Race night

S - A Hattastic Swimathon

T - Get trending on Twitter#Hattastic

U - Ugliest hat competition!

- Knitted hats - sell to raise funds or wear yourself on the big day.

L - Lobbying. Join your local MP in your hats during Brain Tumour Awareness Month (March).

M - Mad hatter’s tea party!

N - Nonsense hat - what can you turn into a hat?

O - Orienteering - can you keep your hat on?

V - Vintage car rally, with vintage hats.

W – Walking with hats – organize a hat-walk and get sponsored!

X – Xtra large hats – the bigger, the better!

Y - Youngsters love to get involvedask your local school to take part

Z - Zumbathon wearing hats. Whatever you decide to do, register today at www.wearahatday.org

Wear A

Hat Day 2016 is just around the corner – and we are certain that it’s going to be hattier than ever!

On Thursday 24th March, people up and down the country will once again don their favourite headgear to take part in the nation’s premier brain tumour awareness event.

There are so many ways to get involved and show your support in finding a cure for the biggest cancer killer of children and adults under 40. Listed here are just a selection of activities from our A-Z of event ideas. (Fulllistavailableonline–alongwithhatfulsofothergreatdownloadableresources!)

We are sure there is something here for everyone, but if you would like further inspiration, please get in touch. wearahatday@braintumourresearch.org

TOP THREE Top-hat Tips!

Let us know what you’re planning!

Take a few moments to fill in our online registration form and we will send you a hattastic fundraising pack, including everything you’ll need to promote and decorate your event.

Included in the pack will be information about how to pay your money in, and order extra materials; either to use yourself or to sell on our behalf. We have everything you’ll need: from car-hats to pin-badges; pens to plush top-hats! Browse our full range on our Hatter’s Workshop webpage: www.wearahatday.org

Share your plans online

Please don’t forget to like us on Facebook and follow us on Twitter and Instagram (search‘Wear AHatDay’)– That way we can easily keep you up-to-date on all the latest news from Hat HQ!

Tell your story

Everyone has a reason for getting involved in Wear A Hat Day. If you have been touched personally by a brain tumour, or care for someone who has, then your story could help raise vital awareness and inspire others.

If you think that you may be able to get the local press to feature your fundraising then you can use the simple press release templates available on our website (www.wearahatday.org).

Simply download the relevant template, edit where applicable and send it to your local newspapers and community newsletters and websites. Don’t forget to include a photo –a picture tells a thousand words.

Join the party on social media! We love to see your be-hatted heads and fundraising fez-tivities and we know our followers will too. Every time you mention BrainTumourResearchor Wear A Hat Day you are helping us raise vital awareness. Use these key hashtags to join in the conversation: #WearAHatDay #Hattastic #FundTheFight #CloserToACure –Help us get them trending on 24th March!

Why not also share a candid #Hatselfie to encourage text donations? Simply post your pic with the following info and ask your friends and followers to do the same! Text ‘Hat’ to 70660 to donate £5. (See our website for terms and conditions).

Whether you post a Hatselfie or host a Wear A Hat Day event, you are helping fund vital research and will bring us ever closer to a cure for this devastating disease.

Each year for Wear A Hat Day, we produce a new Limited Edition Brooch to sell alongside our other hattastic merchandise. In previous years, we have had the privilege of working with highly respected milliners Philip Treacy, Rachel TrevorMorgan and Vivien Sheriff, and most recently in 2015, with the oldest hat shop in the world: Lock & Co of London.

This year we were honoured when remarkable milliner StephenJones,OBE– who has been designing hats for London’s fashion elite for over 35 years – agreed to provide bespoke artwork for 2016’s Limited Edition Wear A Hat Day Brooch.

We couldn’t have been happier with the result, adapted from Stephen Jones’ original sketch, the brooch is a fresh burst of energy and unmistakably characteristic of his striking style.

Stephen opened his first millinery salon in the 1980s at the heart of London’s Covent Garden. Thirty five years later, Jones’ era-defining edge continues to attract a celebrity clientele which includes BoyGeorge,Rihanna,DitavonTeese,andMickJagger!

Our warmest thanks and appreciation go to Stephen for dedicating his time to our cause. His eyecatching design will attract a huge amount of attention and we are sure will sell out in no time!

This brooch (pictured right) is limited to a run of 500 – secure yours now for a suggested donation of just £10.

We have a TOP-HAT range of merchandise available to add some colour to your Wear A Hat Day fundraising. Popular items include our pink and grey wristbands and baseball caps, collectable pin badges, car hats (to attach to your car grille) and our iconic pink plush top hats!

The full range is available to browse online in our Hatter’s Workshop: www.wearahatday.org

Could you sell merchandise for us?

We are more than happy to provide you with boxes of badges, wristbands, pens, and buckets of car hats to help raise extra funds. Perhaps you are part of a cycling group you think would love our cycle helmet pin badges; or know that your

school friends would like to wear our wonderful wristbands or wizard hat pin badges.

Please get in touch today to order your merchandise for Wear A Hat Day 2016!

wearahatday@braintumourresearch.org

Tel: 01908 867200

2016

Stephen Jones, OBE

“I am thrilled one of my drawings has transformed into this beautiful multi-coloured and limited-edition brooch for Brain Tumour Research and Wear A Hat Day. In every situation to me flowers are always inspirational.”

Stephen Jones Brooch

Suggested donation £10.

RESEARCH

iKNIFE! EXCITING NEW SURGICAL TECHNOLOGY TRIALS AS WE LAUNCH OUR FOURTH CENTRE

On 25th September 2015, patients, carers, scientists, clinicians and charities from across the UK gathered in London for the launch of our fourth Centre of Excellence, in partnership with Imperial College Healthcare NHS Trust, London.

The centre has joined our three others based at Queen Mary University of London, and at universities in Portsmouth

The new centre was chosen after a rigorous selection process including international peer review. One of our key experts in this new partnership is leading brain surgeon, Mr Kevin O’Neill: “It’smyjobtogoinandremovebrain tumours,butIknowalltoowellthatthisisn’t enoughtoremovethecancer.Workingwith ateamofresearchers,weareexploringnovel treatmentstohaltbraintumourcellinvasioninto healthybraintissue.”

Kevin was consultant to John Fulcher who was lost to an astrocytoma brain tumour in June 2001 at the age of 52. After his death, John’s widow Wendy set up BrainTumourResearchCampaign (BTRC) , a founding Member Charity of Brain TumourResearch, of which she is chair.

Wendy spoke at the launch: “JohnandIhad beenmarriedfor16years.Itwasonly afterhediedthatIlearnedhowwoefully underfundedresearchintobraintumours hasbeen.TherewasnothingthatKevinor IcoulddotosaveJohnbutmygreatest hopeisthattheresearchtakingplace herewillbringusclosertoacureforthis dreadfuldiseasewhichstrikespeopledown atanyage.”

Wendy was one of the first to place a tile on the new Wall of Hope unveiled on the day; a symbol of another day of research that she has helped to fund in memory of her beloved husband.

We now need to raise at least £1 million a year to help fund research and surgical innovations at the Hammersmith Campus and Charing Cross Hospital, the two sites which comprise our Centre of Excellence at Imperial College.

Dr Nelofer Syed is the lead scientist at the Hammersmith Campus site. Nel has developed

a strong career history in research at the Institute of Cancer Research (London) and Imperial College in London, and has played a key role in identifying a gene (Tip60) that has a critical involvement in breast cancer development. She was instrumental in setting up the John Fulcher Molecular Neuro-oncology Laboratory at Imperial College, funded by BTRC.

Nel’s research investigates various aspects of brain tumour biology, genetics and epigenetics with a particular emphasis on identifying altered metabolic pathways to devise novel therapeutic strategies. Her lab has already generated novel data on deranged amino acid metabolism that is planned to form the basis of a Phase 2 Clinical Trial of arginine depletion as a novel therapeutic strategy for brain tumours.

Nel said: “It’sreallyexcitingtobepartof thiscoregroupofCentresofExcellence, theheartofthischarity-drivenmission istotransformthefaceofbraintumour researchintheUK.Wearealreadysharing ideasanddiscussingresearchstrategywith scientistsattheothercentressowecanbe reallyjoinedupinourcollectiveresearch.”

Indeed, the team at Charing Cross have already made notable progress in the advancements of brain tumour surgery thanks to the invention of the iKnife by Imperial College research scientist, Zoltan Takats. The iKnife has successfully proven to accurately identify brain tumour tissue using real-time analysis during surgery providing immediate life-saving treatment options. The UK’s first formal patient trial using the iKnife is now underway at Charing Cross Hospital. For further information about this trial, please contact our Director of Research, Dr Kieran Breen in the first instance: kieran@braintumourresearch.org

Clinical Research Fellow Babar Vaqas, a neurosurgeon working with Kevin O’Neill and an expert on the iKnife, explained the significance of this technology: “Advancesinbraintumour surgerysuchasthisareveryexcitingand givehopetothethousandsofpatients andtheirfamiliesdiagnosedwithabrain tumoureachyear.Thisisthefirsttimean

advancedsurgicaltoolofthisprecisionhas beenusedinEurope.Thenon-invasive techniqueemployedbytheiKnifeallows ittomeasurelightreflectedtodetermine whetherthetissueiscancerousorhealthy. Inallcancersurgery,theaimistoremove allabnormaltissuewhilesparinghealthy cells.Thisisevenmoreimportantwith braintumours,asremovinghealthytissue cancausepermanentdamagetocognition, motorfunction,memoryandspeech. Thistechniqueandclinicaltrialwillbe ahugestepforwardintreatingbrain tumourpatients.”

withBrainTumourResearchandwewill maximiseopportunitiesforcollaboration throughthispartnershipinordertohelp themintheirmissiontobuildanetworkof braintumourexpertsandfindacurefor thisdevastatingdisease.”

HELP US

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

This is such an exciting time for developments in brain tumour research and what better way to see this for yourself than on one of our lab tours www.braintumourresearch.org/centre-lab-tours

For more information about the research we are funding please visit www.braintumourresearch.org/finding-a-cure

CROSSING THE BLOOD-BRAIN BARRIER: A GRAND CHALLENGE

DR HADWEN TRUST

On 3rd December 2015, we proudly launched the dynamic Grand Challenge fundraising campaign, in partnership with the DrHadwen Trust, at our Research Centre of Excellence in the University of Portsmouth.

The Grand Challenge campaign aims to raise £180,000 to fund a three-year research project into crossing the blood-brain barrier.

Neuro-oncologist ProfessorGeoffPilkington, lead scientist at the faculty, is an international expert on brain tumours and a pioneer in blood-brain barrier research, having created the world’s first ‘all-human’ blood-brain barrier model.

Geoff conducted a special lab tour and presentation to all attendees during the launch event. This provided an overview of how this groundbreaking research is to be conducted, building on his teams’ previous pioneering work in this field.

The blood-brain barrier is a powerful protector 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 cancer-targeting 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.

Geoff said: “Animalmodelsoftheblood-brain barrierweren’tgoodenough;theydidnotdirectly relatetothehumanbarrier,soIsetouttocreate anall-humanversionthatcouldbeusedby laboratory-basedresearchers.Mymodelusesonly humanbraincells,humanbraintumourcellsand humanserum.”

This blood-brain barrier model is being used for live cell imaging and to provide a basis for the investigation of the cellular and molecular features of invading tumour cells. Revealing the precise mechanisms of tumour cells’ invasive behaviour is essential to the development of successful new therapies for this most devastating of diseases.

The Grand Challenge has already attracted support from actor PeterEgan, patron of the DrHadwenTrust. Peter made time to meet with Geoff and discuss the nature of brain tumour research at our centre. The pair posed for press photographers and the images have been used to help launch the campaign in the media. Other celebrities taking up the Grand Challenge include AnnaChancellor,JamesMcArdle, NinaSosonya,OliviaVinallandSamWest.

Could you and your friends, family or colleagues raise a grand (£1,000 or more) to help us cross the blood-brain barrier? For more information about getting involved, fundraising ideas and top tips, plus downloadable resources such as posters and selfie-boards, please visit www.braintumourresearch.org/grandchallenge

One year on and the team at Queen Mary University of London are developing plans that will help define the centre as a key component in our strategy to create the UK’s firstever collaborative network for sustainable and continuous longterm brain tumour research.

GLIOBLASTOMA: STEMMING THE TIDE

The Brain Tumour Research Centre of Excellence at Queen Mary University of London (QMUL) in partnership with UCL Institute of Neurology (UCL- ION) was launched in November 2014 at the Blizard Institute.

The centre is led by Professor Silvia Marino (QMUL) with her lead co-investigators being Professor Sebastian Brandner (UCL- ION), Professor Denise Sheer (QMUL) and Dr Jeremy Rees (Consultant Neurologist at the National Hospital for Neurology and Neurosurgery).

Dr Loredana Guglielmi joined the team in February 2015 as a postdoctoral fellow and a second postdoctoral researcher should be in place in early 2016.

The work of the centre focuses on glioblastoma, the most common and deadly form of brain tumour in adults. As there is no known cure or effective treatment for this type of tumour; research in this area has to be a priority. Where do glioblastomas originate from? How do they develop? These are fundamental questions that must be answered, if we want to develop more effective treatments for this disease.

To address these questions, the team are studying the cell of origin for glioblastomas and are trying

to identify novel genes and pathways that control their behaviour. In particular, the researchers are looking at stem cells; these cells are found in every organ and can develop into specialised cells, thus contributing to the maintenance and ‘regeneration’ of the organ.

Silvia explains some of the details of her work: “Wefindcellsbehavingasstemcellsintumours too;theyplayanessentialrolein‘regenerating’ thetumoursandsokillingthemiscrucial.We aretryingtoestablishthedifferencebetween thesetumourstemcellsthatkeepproliferating –producingothertumourcellsendlessly–and normalstemcells,whichstopproliferating whenthebodystopsneedingnewcells.Ifwe canunderstandhowatumourstemcellcontrols itsproliferation,wecanstartgeneratingmore targeteddrugsthatspecificallykillthesecellsin amoreeffectiveandalsomuchlesstoxicway.”

This first year of the partnership with Brain TumourResearchhas been exciting and rewarding for the team. Denise said: “We’vehad 20patientsgenerouslydonatingtissuefrom theirtumoursforresearchandwesuccessfully establishedconditionsfortheisolationand characterisationofbothtumourstemcellsand normalstemcellsfromthesamepatient.We

havebeeninspiredbymeetingdedicatedand committedsupportersofthecharityandofits veryimportantcause.”

The staff at QMUL have joined BrainTumour Researchat many fundraising and lobbying events and along with our other centres are helping us create a full picture of brain tumour research across the UK.

In 2016, the teams at QMUL will focus on comparing the properties of normal and neoplastic stem cells – stem cells that are abnormal and thus responsible for tumour growth – to understand what allows glioblastoma to be resistant to current treatments and move forward to develop novel drugs that will attack and kill these tumours.

Denise continued: “Weareverygratefulfor thegeneroussupportwereceivefromBrain TumourResearch!Pleasecomeandvisitus onanorganisedlabtour,getintothemindof abraintumourscientistinourredlabcoats

Low-Grade: High Priority

The pioneering partnership with Plymouth University was formally launched in November 2014. Led by Professor Oliver Hanemann, the research focuses on low-grade brain tumours, in particular schwannoma, ependymomas and meningiomas.

The research team has previously identified specific genes that are associated with these tumour types and is now carrying out detailed studies to determine whether information about how these genes work may help us to design better and more effective treatments.

The team at Plymouth operates a holistic ‘bench-to-bedside’ strategy. They examine biochemical and genetic characteristics of brain tumour tissue. They correlate these with the patients’ clinical history to better assess how tumour genetics influence factors such as response to specific drug therapy. They can also use the information to try to identify biomarkers: specific characteristics which can provide information on the development of brain tumours and help gauge whether specific drugs are working.

Tucked away in a beautiful corner of Britain is one of Europe’s leading research facilities, developing world-class programmes of research into low-grade brain tumours. Welcome to the Plymouth University Brain Tumour Research Centre of Excellence.

Oliver said: “Wehavejuststartedaclinical studyusingacombinationofdrugsthat isbasedonthestudyoftumourgenetics. Oneoftheseisthemerlingenewhichnormally preventsnervecellsfrommultiplying.However, ifthegeneismutated,thecellscanstartto divideandgenerateabraintumour.Drugsthat maycounterordisruptmerlinorsimilargene mutationscouldhavegreatpotentialforthe treatmentofspecifictumours.”

The initial study involves a small number of patients with specific tumour gene defects and it will assess whether the drugs can enter the brain and if they appear to be working as expected. If the results from this are positive, our scientists could then develop a study to explore clinical benefits for people with these tumour types. As the drugs are already being used in the clinic for other conditions, it will make it much easier to develop further clinical trials.

The Centre is part of the Medical Research Council Brain Bank consortium – a ‘virtual’ brain tumour tissue bank with a central registry of all brain tissue samples within the UK allowing other researchers access to any samples collected at Plymouth, thereby maximizing potential research benefits.

Plymouth University views neuro-oncology as a key research area and is investing in a number of research positions to ensure it maintains its Centre of Excellence reputation. The researchers at Plymouth are also very active in supporting our campaigns, joining us at workshops, helping lobby MPs at Westminster and enjoy regular participation in our fundraising events. Indeed, we are a partnership deeply committed to joint fundraising initiatives wherever possible.

THE HOPE TREE CHRISTMAS APPEAL...

Whilst Christmas is traditionally a time for togetherness and celebration, we know that the festive season can be a very difficult and uncomfortable time for many of our supporters: brain tumours don’t stop for Christmas, so nor do we.

With another Christmas just passed, we’d like to give special thanks to all who made a donation and wrote a message for our Hope Tree Christmas Appeal.

We received messages of remembrance, determination and support, but mostly, of hope. Despite the terrible hardships our supporters endure, they are determined that their story will not be one which is repeated for other families indefinitely for years to come. It is with their generous contributions that we are moving ever closer to a cure for this devastating disease.

Thank you to everyone who supported the Hope Tree Christmas Appeal in 2015; we are sending all our love and strength to you for the New Year, and for the future.

Here, we would like to share just a few of the messages we have received.

For more information about the Hope Tree Christmas Appeal, or about our Centres of Excellence, please visit www.braintumourresearch.org

ALL PARTY PARLIAMENTARY GROUP ON BRAIN TUMOURS

Following the 2015 General Election, the All Party Parliamentary Group on Brain Tumours has been re-established and will continue to raise awareness of the issues facing the brain tumour community in order to improve research, diagnosis, information, support, treatment and care outcomes.

We are delighted to confirm that Rebecca Harris MP will remain the Chair of the Group and will be joined by Kevin Brennan MP, Lord Carlile of Berriew and Mark Durkan MP as Vice Chairs, while newly elected MP Caroline Ansell has joined the Group as the Secretary. The group has gone from strength to strength since John Bercow helped us to establish it in July 2005 and we are delighted that we have an ever-growing list of supportive Parliamentarians.

The APPG has been at the heart of our campaigning in Parliament and we are delighted to provide the secretariat for the Group. We will ensure that the Group continues to be active, authoritative and innovative, but above all represents the voices of the brain tumour community.

CANCER DRUGS FUND

The Cancer Drugs Fund is due to expire in April next year and we are working with the government to ensure that its replacement provides the best possible care for brain tumour patients.

The fund was launched in 2010 by the Coalition Government and has since spent around £200 million on drugs – including two that treat patients with brain tumours – that were previously unavailable on the NHS. So far the fund has treated around 60,000 patients in England and has been widely hailed as a success. Always designed as a temporary measure, NHS England and the government have released a consultation on what a replacement should look like and how the fund can be improved and we will ensure the voice of brain tumour patients and their families are heard.

We are striving to fund a network of seven dedicated research centres

As proposed in our manifesto ‘Invest in a Cure’, we are campaigning for an additional criterion in the new fund that will prioritise treatments for the cancers that particularly affect younger patients. Brain tumours kill more children and adults under the age of 40 than any other cancer in the UK, but there are currently too many disincentives to research and developing new drugs to tackle the disease. We believe the new fund can help change this by prioritising drugs for cancers that affect younger patients, therefore incentivising research for brain tumours, and will be campaigning to ensure this becomes a reality.

Just 1% of the national spend on cancer research has been allocated to this devastating disease

Registered charity number 1153487 (England and Wales). Company limited by guarantee number 08570737 (England and Wales)

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

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Shine a spotlight on research funding for brain tumours Incentivise treatment. Prioritise brain tumour patients

Tumour Research Manifesto 2015 INVEST IN A CURE Treatments for brain tumour patients lag seriously behind other cancers. The national investment in brain tumour research needs to increase to £30-£35 million each year over the course of the next parliament. We call on the UK Government to work with Brain Tumour Research and its partner organisations to: Facilitate innovation. Ring-fence funds for brain tumour research

This is unacceptable! 1

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£348.0m £507.3m National Cancer Spend Fundamental Other Leukaemia

We are calling for the national investment in brain tumour research to be increased to £30-£35 million per annum. The Government and larger cancer charities should invest more in brain tumour research. At the current rate of spend, could take 100 years for brain cancer to catch up with developments other diseases find cure. In July 2009 Brain Tumour Research published our first revelatory report. The Inequality of Funding The first kind revealed some of the facts surrounding brain tumours. March 2013, in partnership with New Philanthropy Capital developed Brain Tumour Research Funding Flows revealing new insights into the inequality and chronic lack of funding coupled with an alarming increase in incidence and mortality rates.

In July 2013, we published a ground-breaking report the state of Research Funding for Brain Tumours. This remains the most comprehensive analysis of its type ever published. current the research field is unclear. Brain Tumour Research held conversations with members of National Cancer Research Institute (NCRI) during 2013 and 2014 to shed some light into how research money awarded and reported the results in our Report Update on National Research Funding – July 2014.

just 1% 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 is allocated to this devastating disease We are striving to fund a network of seven dedicated research centres whilst challenging the Government and larger cancer charities to invest more in brain tumour research. Help us fund the fight. Together we will find a cure. Introduction Scientific research into brain tumours is significantly underfunded in relation the number people affected by the cancer and in comparison to other types of cancers. To improve outcomes and save lives, research into brain tumours needs the same level of investment as cancers such as breast cancer and leukaemia, if are to see advances treatments.

Itistimebraintumourresearchreceiveditsfairshare.

FACILITATEINNOVATION

treatmentsforthosecancersaffectingyoungerpatients. forBraintumoursdisproportionatelyaffectyoungpeople.Theyareresponsible over20yearsoflifelost –morelethalthananyothercancerandlessthan20%ofthosediagnosedsurvivebeyondfiveyears Crucialresearchis currentlyprohibitedbythelackofrecognitionoftheimportanceofprioritising ofresearchanddevelopmentwhichfocusesonthispatientgroup.Theaddition crucialthiscriterionwouldincentivisecommercialorganisationstoinvestinthe Developingresearchneededtofindacureforthisdeadlydisease.newdrugscantakeyears.Around16,000peopleayeararediagnosedwithaprimaryorsecondarybraintumour Upto40%of cancersspreadtothebrain andsome3,600peopleayeardiefrom primarybraintumours Witheverydelaytodrugdevelopmentlivesare beinglost. vitalWearecallingforgreaterrepurposingofdrugstoensure researchisnotwastedandcanbeusedtothebenefitofallpatients. drugDrugsrepurposingreducesthetimeframeanddecreasesthecostoflifesaving developmentandisacrucialmethodofsavinglives.Thispracticedoes thenothappenenoughandshouldbeencouragedbytheGovernmentand NHS.

Braintumourskillmorechildrenandadultsundertheageof40thananyothercancer Yetjust1%ofthenationalspendoncancerresearchisallocatedtothisdevastatingdisease 16,000peopleeachyeararediagnosedwithaprimaryorsecondarybraintumour Lessthan20%ofthosediagnosedwithabrain tumoursurvivebeyondfiveyearscomparedwithan averageof50%acrossallcancers Braintumoursrepresent1%ofcancersdiagnosed,yet3%ofcancerdeaths Upto40%ofcancersspreadtothebrain

Get involved OFF-PATENT DRUGS BILL

Since his arrival in Parliament this year, Nick Thomas-Symonds, the new MP for Torfaen, has been championing the issue of off-patent drugs, through a private members bill and an APPG, and we have been supporting him in his efforts.

Off-patent drugs are no longer protected by a patent and, therefore, are often not widely available as pharmaceutical companies have no commercial incentive to sell them. Patients are often missing out on potentially lifesaving treatment because these drugs are not used by GPs and doctors due to a lack of knowledge about their uses and fear of repercussions should the treatment fail.

BrainTumourResearchsupported this Private Members’ Bill as we believe that making these drugs more available to brain tumour patients would take great strides towards saving some of the 16,000 people who are diagnosed with a

Grantapplicationstoexistingresearchfundingbodiesrequireevidenceof bepreviousresearch(pilotworkaswellaspublishedresults).Applicationsmust beforedeemed“lowrisk”innatureandashavingahighlikelihoodofsuccess theyareawarded.Thismeansthattherehastobeapre-existingbank ofevidence.Novelresearch,particularlyrelatingtobraintumours,suffersasa oneconsequenceoflackofexistingresearch.Thisisaself-perpetuatingcycleand thatmustchange. FundWearecallingontheGovernmenttoring-fenceanInnovation generationfromexistingresearchbudgetstokick-startthenext ofground-breakingandlifesavingdiscoveries. cancersThisring-fencedFundshouldbesetasideforareasofnewresearchonrarer projects,anddiseaseswithalowerthresholdforgrantstobeawardedinnew orinexistingschemessuchasthe100,000GenomesProject.This unablestimuluswillcreateanewwaveofresearchthatpreviouslywouldhavebeen treatmentstotakeplace,wideningourknowledgeofcancerandcreatingthe need. WearecallingontheGovernmenttodevoteanabsolute amounttobraintumourresearch. deathsBraintumoursrepresent1%ofcancersdiagnosed,yet3%ofcancer WithinthisFundaconsistentorgrowingabsolutefigureshouldbedevotedbytheGovernmenttobraincancerresearch.

moretumoursBrainkill children andadultsunder thantheageof40 canceranyother ofnational onspendcancer research FACTS & STATS SHINE A SPOTLIGHT ON RESEARCH FUNDING FOR BRAIN TUMOURS Researchers, institutions and the Government are unable to present in place exactly what research is being funded and the results that are being achieved. The Medical Research Council (MRC) prioritises ‘living a long and healthy life’. is difficult to assess whether research grants and awards reflect these priorities. The NCRI gives an indication of some of the money spent on research, yet the data collected from just 22 institutions nationally (seven of which are government funded bodies), giving an unclear picture. We are calling for the Government to create national register of all site specific cancer research track all research work, grants and results.

Receives Researchers, universities, research institutions, the Government and the public will be able to easily see what diseases and specific cancer sites are receiving funding how successful this funding is. will open up debate about need and value for money, empowering rarer cancers, and preventing duplication. The Report Update on National Research Funding – July 2014 also presented stark new facts about brain tumours. Startlingly, one in 50 of all people who die under the age of 60 years are dying from brain cancer And, just as shockingly, 71% of those who die of brain tumour be under 75 years old, compared 47% for all cancers We are calling for the Government’s cancer research fund to prioritise reducing deaths under 75. The NHS National Outcomes Framework prioritises improving outcomes for cancer patients and reducing deaths among the under 75s. The fight against brain tumours is part of the solution to this challenge.

MPs represent you and your community in Parliament and will always try to make sure their constituents’ concerns are listened to and acted upon when they can. An MP can raise matters in the House of Commons through:

• Parliamentary Questions (PQ’s) –Oral and Written

• Adjournment Debates

• Early Day Motions (EDMs)

We are constantly talking to MPs to promote the voice of brain tumour patients and if you would like to join us please email: campaign@braintumourresearch.org

primary or secondary brain tumour each year. BrainTumour ResearchChief Executive, Sue Farrington Smith sat on a panel giving evidence at the APPG for Off-Patent Drugs in October and we will continue to support this exciting bill until we see the results patients need.

Despite having a great deal of support, this bill is unlikely to progress through the necessary stages to become law, as the government believes that legislation is unnecessary in this area. BrainTumourResearchwill continue to promote the need for greater drug repurposing within Parliament and more widely.

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

MPs SUPPORTING US

in 2010 to represent the constituency of Milton Keynes South and retained the seat in the recent General Election with a majority

Nick Thomas-Symonds MP

Despite only being elected to represent the Welsh constituency of Torfaen in May 2015, Nick Thomas-Symonds has already made a significant impact on Parliament as both a Shadow Minister for the Department of Work and Pensions and by championing the cause of off-patent drug use.

of 8,672. Iain first lived in Milton Keynes in 1993, moving from Scotland to take up a job as an accountant with Coopers & Lybrand in central Milton Keynes. In addition to his political career, he has also worked in executive recruitment.

Despite leaving, Iain maintained his links with Scotland. He was head of research for the Scottish Conservative Party for four years and contested the Labour stronghold of Glasgow Rutherglen in the 1999 Scottish Parliament elections.

Iain has had a distinguished time in Parliament, including serving on the Select Committee on Transport and being appointed Parliamentary Private Secretary to the Transport Secretary Patrick McLoughlin in 2013. He is currently Parliamentary Private Secretary to David Mundell as Secretary of State for Scotland and is playing a

key role in the current Scottish Bill going through Parliament. He has also rejoined the Transport Committee and is a regular speaker at national and international transport conferences. Our Local Member of Parliament for our new head office, Iain has been an active supporter of research into rarer cancers and other medical conditions, regularly asking questions and supporting campaigns, and we hope that together we can improve the lives of brain tumour patients across the UK.

Together we will find a cure

Previously a barrister, lecturer and author, Nick was selected to replace the veteran Paul Murphy and defend a solid majority of 9,306. Despite strong gains from the Conservatives in Wales he held the seat with a strong majority of 8,169 and within four months of his election was made Shadow Pensions Minister by the new Labour Leader.

As well as his work for the opposition, Nick has been very active in promoting the wider use of off-patent drugs which have been found to be effective in new indications in the UK. Through a Private Members’ Bill and an APPG, he has championed the patients in the UK that are in

most need of new treatments, including brain tumour patients, and will continue to do so in the coming months.

BrainTumourResearchhas supported Nick’s efforts, speaking at the APPG for Off-patent Drugs and supporting the wider campaign, and thank him for his work so early in his Parliamentary career. We hope that together we can make sure that brain tumour patients, as well as those with other rarer cancers and those with low survival rates, will soon receive the treatment they desperately need.

Campaign with us

SUPPORTING CHANGE

In the Autumn of 2015 the underfunding for brain tumour research became the subject of the first inquiry of the House of Commons Petitions Committee and has been examined in fantastic detail in a number of sessions. The Committee chose the subject following an e-petition started by Maria Lester (née Realf), with the support of Brain TumourResearch, and is in the process of reviewing written evidence from charities, submissions from members of the public and of course the oral evidence presented in committee sessions.

These sessions have seen our Chief Executive Sue Farrington Smith and Professor Geoff Pilkington, who leads our BrainTumourResearchcentre at the University of Portsmouth, speak passionately about their personal experience of brain tumours, the current state of treatment and the urgent need for more research. Among the many issues Sue spoke about was the need for an innovation fund to protect the “nextgenerationofresearchand findsomeground-breakingdiscoveries” , while Maria and her parents, Peter and Liz Realf, spoke

passionately about their personal experience of losing their son and younger brother Stephen in August 2014.

The Petitions Committee was established after the 2015 election by the House of Commons to review all e-petitions and decide whether to take them forward.

The Petitions Committee can:

• Ask for more information in writing – from petitioners, the government, or other relevant people or organisations

• Ask for more information in person – from petitioners, the government, or other relevant people or organisations. This might be in Parliament or somewhere else in the UK

• Write to the government or another public body to press for action on a petition

• Ask another parliamentary committee to look into the topic raised by a petition

• Put forward petitions for debate in the House of Commons

We believe we have put forward the strongest case possible to the committee and eagerly await their recommendations.

HAVE YOU SIGNED?

We need 100,000 signatures by the beginning of February 2016

www.braintumourresearch.org

Ali’s Dream

24th March 2015 was the 10th anniversary of the loss of Jack D’Lima at the age of 10. Jack was just 15 months old when first diagnosed with a brain tumour in 1996. During the nine years Jack bravely battled on, he underwent surgery four times, but the tumour kept growing back despite chemotherapy and radiotherapy treatments.

His family set up Jack’sGoal, an umbrella group of Ali’sDreamto fund research into paediatric brain tumours with a yearning to see a cure found so that other families didn’t have to go through what theirs had and to establish a lasting legacy for Jack. In fact, Jack was at Westminster in 2004 for the first ever reception attended by brain tumour charities and was delighted to meet John BercowMP,SpeakerfortheHouseofCommons Jack’sGoalhas now raised over £70,000, including £6,500 at Jack’s 10th anniversary dance in March.

Also in March, Jack’s mum Beverley, a trustee of Ali’sDream, spoke at the Speaker’s House event in which she said, “Thereisonlyso muchthatcharitieslikeuscanachieve throughfundraising.Itisfrustratingthat researchhascomeonsolittlesincewelost Jack,butIwelcomethehugeincreasein awarenessandtakeheartthatCentresof Excellence,liketheoneinPortsmouth,will, withcontinuousfunding,makegreatstrides forward,similartowhathashappenedwith othercancers.However,Iwillneverbeable tofilltheemptinessIamleftwith.Notaday goesbywhenIdon’trememberJackand

wonderwhathewouldnowbedoingwith hislifeiftherehadbeensomethingthat doctorscouldhavedonetosavehim.”

Another Ali’sDreamtrustee, HarryTaylorwho had nursed Jack D’Lima and Alison Phelan (Ali), as well as Anna Hughes (who inspired fellow member charity Anna’sHope) and Jack Byam Shaw (Patron Sheila Hancock’s grandson) also spoke at the Speaker’s House event alongside Beverley and SheilaHancock

Jack Byam Shaw (22) with mum Melanie and grandmother Sheila Hancock, CBE with nurse Harry Taylor and families of Alison Phelan, Jack D’Lima and Anna Hughes

Astro Brain Tumour Fund

The ninth NorfolkFamilyWalktook place on Sunday 11th October 2015. Over 400 people and their 171 four-legged friends took part in the walk at Holkham Hall in Norfolk. They collectively walked over 2,500 miles!

themselves to fish and chips along the route! Many children in attendance completed a very exciting treasure hunt, with prizes kindly donated by Hunstanton Rotary Club.

There were four options of route length: the one-mile walk was for children, wheelchairs, prams and trikes along the road to the obelisk, where there were games to play. The three-mile walk took fundraisers around the lake near the resident deer, with a marked nature trail. The six-mile route took ramblers all over the spectacular farmland with amazing views; and the 10-mile walk went out of the parkland, into Wells-next-the-Sea and back along the sandy beach to Holkham Hall.

The NorfolkFamilyWalkhas gained a tremendous following over the nine years that it has been running, with some regular walkers making it an annual family day out; even treating

The 2015 event raised over £8,000 at the time of writing, with sponsorship still coming in! All miles walked were once again donated to IBTA’s (the InternationalBrainTumourAlliance) fantastic Walk Around the World for Brain Tumours campaign. Find out more at www.theIBTA.org.

www.astrofund.org.uk

Brain Tumour Research Campaign (BTRC)

On Friday 5th June 2015, BTRC held their 12th Annual Amber Ball; the success of which has taken the group beyond the £2 million fundraising mark!

A truly breath-taking achievement.

The glamorous evening at TheHurlinghamClub was enjoyed by all and BTRCwere delighted to announce that £40,000 was raised for their campaign towards brain tumour research at Imperial College, thanks to the generous donations of those who were there (and others who weren’t!). Wendy Fulcher, Founder of BTRC, said that she thinks the secret of their success is the “money can’t buy” prizes that are donated each year. In 2015 they came from around the globe including Fairmont Hotels in the Canadian Rockies and others in Hong Kong, France, and of course the UK. TV personality Tom Keane conducted the live auction and BTRC’s favourite band Fake Tan entertained guests until the early hours of the morning.

The past year has been another busy one for the clinicians and researchers funded by BTRC, with some ground-breaking work taking place in both laboratory and neurosurgical fields, thanks to the dedicated hard work of their fundraising committee and other supporters. This gave the group some very welcome publicity on TV, radio and press around the world.

On a sad note, BTRClost a dear friend, wonderful supporter and dedicated trustee in 2015: DanWigginsdied on 5th September. He was first diagnosed with a brain tumour in 2006, but fought with huge determination and courage to lead as normal a life as possible, and to raise awareness and funds for research; organising bike rides from John O’Groats to Lands End, around Ireland and across Norfolk, raising over £125,000. He campaigned in Parliament and supported the annual Amber Balls – not only by allowing his time to be auctioned as a keen sailing instructor, but also by thoroughly enjoying himself on the dance floor! BTRCand BrainTumourResearchwould both like to offer their warmest thoughts and prayers to Lucy, his lovely wife, and all his family who have been (and continue to be) fantastic supporters.

Members Workshop

Our sixth members’ annual workshop was held in November 2015. It’s always a chance to inspire, make new friends, rekindle relationships, discover new ways of doing things, get ideas and rejuvenate to keep us motivated to continue to support brain tumour patients and their families and fund research to find the cure.

The theme of this year’s workshop was achieving our 2020 vision, reinforcing our united front and sense of community and togetherness.

Together we want to ensure:

•Focused research programmes at UK Centres which are collaborating globally

• National awareness

• Improved diagnosis time

• Support and information widely available

• Significant improvement in five year survival – with quality of life

The three days saw us sharing our achievements and plans, including discussions on increasing awareness through lobbying, March’s Wear A Hat Day (which focuses on raising funds for research) and October’s Wear it Grey for A Day (led by brainstrust,this focuses on raising funds for support). Michelle Chambers from ThinkConsultingled an interesting morning on community fundraising and we had presentations from researchers at each of our four centres of excellence, who updated us on their latest research news.

It never ceases to amaze us just how much we and our member charities achieve in the twelve months since we last got together and indeed how much of a difference we have made together since we launched in 2009.

COULD YOU SPARE SOME TIME?

We are always looking for extra help, whether it be at fundraising events, in the office or raising awareness up-and-down the country. Each individual who volunteers for us makes a valuable contribution to our cause; one which can never be underestimated. Please get in touch if you are interested in volunteering for us, in any way. Whether you’d like to donate time, skills or items to help raise funds. We can’t wait to hear from you!

robyn@braintumourresearch.org

01908 867200

P.S. Keep an eye out for volunteer opportunities on our social media pages and on our website! www.braintumourresearch.org/volunteer-for-us

HELPING

HANDS

Brain Tumour Research simply could not function without our incredible team of dedicated volunteers. From event support to office administration; distribution of collection tins, to participation in fundraising and lobbying campaigns: each and every one of you is a treasured member of the Brain Tumour Research family.

Together we will find a cure

Here we highlight the personal stories of two people who have made huge contributions to our cause. And to the rest of you, we are sending a huge

THANK YOU!

Lorraine White

Lorraine was first moved to get involved with BrainTumourResearchafter her granddaughter Shannon was diagnosed with a brain tumour. Shannon is now 19 years old and started an undergraduate degree in Music Technology at the University of Portsmouth in September 2015, despite having almost totally lost her eyesight.

Being local to BrainTumour ResearchHQ, Lorraine popped by one day simply to buy some pens and merchandise... and the rest is history! She now volunteers at the office every Thursday to fit in around her own work schedule, completing all manner of administrative tasks, sending out merchandise and generally keeping our cupboards, shelves and stock-areas tidy!

Lorraine’s contribution is absolutely invaluable to us, and she is delighted to help:

“Idon’tknow,Ijustcomeoverto thecentretovolunteer.Ithinknothingof it.That’sjustit,IjustfeellikeIamdoing somethingtohelp.”

We love having Lorraine around, she’s not only a valued volunteer, but also a friend to all!

David, 45, initially got in touch with BrainTumour Researchafter he saw a Facebook post calling for volunteer help in the Portsmouth area. As a cause so close to his heart, David had been thinking he would like to help in some way, so when the opportunity arose he jumped at it.

“Myyoungestson,Ben,wasdiagnosedwith abraintumourattheageoftwoandhas subsequentlyhadtwooperationstotryand removeit,nowattheageof12heisstillliving withsometumourremaining.Howeverwewere theluckyonesashistumourwasbenignand hashadnoreallastingimpact,sotryingtohelp otherseveninasmallwayseemedagood idea.Ienjoyvolunteeringasitisverydifferent tomydayjob,workingforalargesoftware company,andgivesmetheopportunitytotry andhelpothers.”

David has been working closely with Tim Green, our Regional Fundraising Manager in Portsmouth, since April 2015, assisting in the placement and retrieval of over 100 collection tins. Raising not only funds, but also extensive awareness, right in the heartland of BrainTumourResearch’s inaugural research Centre of Excellence at the University of Portsmouth!

THE ONLINE FUNDRAISING & SOCIAL MEDIA GUIDE

Raising money online couldn’t be easier – it’s a great way to help us fund the fight without even leaving home. There are so many ways to donate without any extra cost to yourself, whether through shopping online or donating old clothes. Here’s our Top Three Tips –they’re only a click away!

1 easyfundraising

Each time you buy anything online, from your weekly shopping to your summer holiday, you could be raising a free donation for BrainTumour Research. Sounds too good to be true? Notwith easyfundraising!

Nearly 3,000 online retailers are signed-up to easyfundraising, including household names such as Amazon, John Lewis and Sainsbury’s. After you complete your purchase, a percentage of your total spend is donated to BrainTumourResearch, at no extra cost to you.

Getting started is really simple: head to www.easyfundraising.org.uk/causes/btr/and sign up for free. Then every time you shop online, simply go to easyfundraising first and pick the retailer you want to visit. This will take you through to the retailer’s regular website, where you can shop as normal – easyfundraising handles the rest!

2 Clothes For Charity

Clothes For Charity is our newest way to give online – it’s a secure, simple and hassle-free way to donate your unwanted clothes.

To get started, head over to www.clothesforcharity.org.ukand sign up, you will then be able to select BrainTumourResearch from a list of charities and request a bag.

After you’ve filled up the bag with clothes, shoes and accessories, it’s as easy as requesting a pick-up time that suits you.For every tonne of clothes received, Clothes For Charity gives BrainTumour Research£200 of vital funds. It couldn’t be easier!

3 eBay for Charity

We all know eBay as a great place to find a bargain, but did you know that whether you’re buying or selling, you could also be using it to raise valuable funds?

When selling on www.ebay.co.uk, why not try donating a percentage of your sale to Brain TumourResearchthrough eBay for charity? Simply opt for ‘Advanced Sell’ when choosing how to list your item. You will then find the option to add a percentage to charity – choose Brain TumourResearchand the money will come to us automatically.

You can also find the items that are being sold for us by going to http://charity.ebay.co.uk/and searching for BrainTumourResearch– you may just find the perfect item you’ve been looking for!

Facebook is the very best place to find out everything that’s going on in the world of Brain Tumour Research.

We post daily updates covering everything from supporter stories and upcoming fundraising events, to research and lobbying news.

Facebookis such a powerful connector and our supporters do an amazing job of spreading brain tumour awareness far and wide by liking, commenting and sharing our updates to their own Facebookwall. One click is all it takes to share with your family and friends, helping to spread awareness world-wide! (Didyouknowyoucantag peopletomakesuretheyseethepost?Simplytype @andtheirname!)

If you need some help getting to grips with how it all works, send us a message on Facebookor email us... or email ross@braintumourresearch.org and he’ll be more than happy to help!

Social media has changed the way we all communicate on a day-to-day basis, and we love using Facebook, Twitter and Instagram to keep in contact with our supporters! Here are our top tips, for when you’re tweeting, posting and sharing, to help you raise awareness through social media:

Twitter is a simple and snappy tool for communicating online – we love to chat with our wonderful followers and use it as a tool to share quick updates.

As well as sharing our latest news, we often livetweet from important events directly to the brain tumour community; a simple retweet from you will help us reach a larger audience and make our collective voice even louder, increasing awareness on a global scale!

Twitteris also a great way for you to share news of your fundraising. Getting ready for your first ever marathon? Tell us about your training! Organising a Wear A Hat Day event? Whatever you are arranging, let us know your plans! We’ll be with you all the way.

Top Twitter Tip! Tweeting a link to your JustGiving page gives people a direct route to leave a message of support and top up your total!

P.S. Don’t forget to use hashtags so that others can easily find your tweets #FundTheFight #FightingForce and #CloserToACure are ones we use daily!

Instagram is now the most popular online photo-sharing tool, with a staggering 400 million users and 40 million posts per day!

We love it when our audience get into the spirit of Wear A Hat Day on Instagram – we especially enjoy all the fantastic #Hatselfies!Why not share yours on 24th March? Be colourful, be bold, be imaginative; Instagram is a playground of creativity and could help us unlock huge awareness for brain tumour research.

Remember to tag @wearahatdaywhen sharing your photos, as well as hashtagging them with as many keywords as you can think of. (Notsure whattohashtag?Simplysaywhatyousee!) The more hashtags, the more chance your photo has of being seen and ‘liked’. Our favourite is #HatsofInstagram , but we’d love to hear which ones work for you!

Artist and writer

Marion Coutts married the art critic and illustrator Tom Lubbock in 2001. Ten years later, Tom died aged 53, after being diagnosed with a Grade 4 glioblastoma multiforme (GBM).

The tumour was in the left temporal lobe of Tom’s brain – the area responsible for speech and language. As a writer, the ability to communicate was of utmost importance to him: “Thegetting ofthingsexactlyright withwords,refined andcompacted,is myjobofmanyyearsstanding.Itis mypride.”Despite the debilitating effects of the tumour, Tom continued to work, publishing an extended article ‘When Words Fail Me’ in The Observer in November 2010, three months before he died. His memoir of his illness, ‘Until Further Notice I Am Alive’ was published in 2012. Both are compelling descriptions of his experience with the disease from the inside.

After his death, Marion published her own moving account of her husband’s battles with a brain tumour. ‘The Iceberg’ – which Marion describes not simply as a book about death but also about life and life going on. The book won the Wellcome Book Prize in 2015 and has been widely lauded for its vivid retelling of the family’s experience.

Marion Coutts

“Tom’smindisbusy.Hehasabraintumourbut hestillhasamind.Whereishismind?Whereit wasthismorning.Thebraintumourisinitbut thebraintumourisnotit.Yesterdayandtheday before,thedaybeforethat,andallthedaysfor howeverlongsince,thetumourwasalready therebutwedidnotknow.Athingfirsthidden inthesiteofconsciousnesslaterbecomes knowledge.”(Excerpt from ‘The Iceberg’, published by Atlantic Books, 2014)

Marion is now determined to use her experience and status to raise widespread awareness of the desperate need to increase funding for brain tumour research, and we were so grateful when she committed her time to helping us do so.

Marion helped launch Brain Tumour Awareness month in March 2015 by writing an eloquent piece, ‘Notes on Loss’, for The Huffington Post. The article highlighted our key statistics and called for greater general awareness of the disease. The poeticism and frankness of the piece attracted much attention and was an incredible way to start the month.

In September 2015, Marion attended the official launch of our fourth research Centre of Excellence, at Imperial College London. She read an extract from ‘The Iceberg’ to an audience of carers,

The Iceberg is available to buy online and from all good bookshops.

patients, supporters, scientists and clinicians. This was well received amongst all in attendance and attracted increased media attention for the event.

We are incredibly thankful to Marion for joining us to mark a significant milestone in the progress of brain tumour research, and for her ongoing and dedicated support in raising awareness.

You can read Marion and Tom’s full story on our website: www.braintumourresearch.org/in-our-hearts

Alan Craigie

Alan Palmer

Alan Stanton

Albert Pearce

Anne ‘Boo’ Knackstedt

Annette Forde

Anthony Osborne

Barbara Birchenough

Benjamin Wigley

Beryl Driscoll

Brian Bowers

Caroline ‘Lou’ Taylor

Caron Perry

Catherine Benfield

Christine Bonney

Clare Carroll

Colin Wheal

Constance Collins

Cyril Loader

Danny Jones

Derek Hayward

Edgar Adcock

Emma Welch

Eric Holden

Florence Phillips

Fredo Tripos

Gaynor Brown

Geoff Busby

George Stewart

Gerald Morriss

Gillian Mckee

Gillian Oakley

Gladys Lammas

Glenn McMahon

Graham Lidstone

Harold McMellon

Harry Burnham

Hazel Swan

Helen McAllister

Helen Olubunmi Awe

Hollie Rose Devine

Ian Lynch

Ingrid Easterbrook

Irena Hill

Jacob Pryce

Jacqui Smith

James Hooke

Janet Batten

Janet Butler

Jean Horswell

Jean Jones

Jeremy Suter

Jillian Wyatt

Jo Aird

John Clay

John Colston

John Dyer

John Knight

John Manley

John Nunn

Joyce Parsons

Julian Deadman

June Hackney

Karlene Mackie

Kathleen Roe

Kathy Bridge

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.

Keiron Bruty

Keith Harvey

Keith Newstead

Kenneth Buckland

Leanne Maxwell

Lisa Brenchley

Lynne Cornish

Lynne Irvine

Margaret Jack

Mark Harrison

Mark Howard

Matthew Wright

Maureen Spencer

Melvin Grist

Michael Whittaker

Mike Burnham

Neil Ancell

Neville Holt

Pat Ballard

Patricia Gulliver

Paul Mills

Paul Plowman

Paul Shepperd

Paul Taylor

Rae Macleod

Robert Alexander

Robert Bittlestone

Robert Cobley

Robert Templeman

Rodney Morris

Ronald Young

Rowena Ellams

Roy Cooper

Sheila Moir

Sheila Peat

Simon Philip Tierney

Stella Penalver

Stephen Roberts

Steve Aveyard

Steven Lloyd

Stuart George

Stuart Gunthorpe

Sue Defries

Susan Mitchell

Susannah Taylor

Tom Attwater

Trevor Arthur Lunnon

“Because remembering you is easy, I do it every day, but there’s an ache within my heart that will never go away.”

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