Believe Summer 2017

Issue 009 – Summer 2017

The news magazine for brain tumour activists

Do Lunch!

Read more inspirational stories inside

Host a super Summer get-together on 1st July

&

Collaboration

Image Š Alan Strutt

between Plymouth University and Imperial College leads to new clinical trial

+

COVER STORY

Going the distance:

Task and Finish working group

holding the Government to account www.braintumourresearch.org Tel: 01908 867200 | info@braintumourresearch.org

The Nicki Waterman Kerala Challenge

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

YOU CAN

Just

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

1%

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

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

N AT I O N A L FREE WILLS NETWORK Please tell us where you saw this advert when responding

Contents 6 Wear A Hat Day 2017 – Thank You! 8 Latest news from our fantastic Fundraising Groups 10 Do Lunch!

Host a super Summer get-together 12 The Nicki Waterman Kerala Challenge going the distance 14 Supporters in a spin for On Yer Bike 2017!

20 The story so far we reflect on Brain Tumour Research’s progress with some of our longest-standing supporters

26 Meet our Trustees

22 Research Updates Crossing the blood-brain barrier: an interview with Dr Zaynah Maherally

30 Task and Finish working group holding the Government to account

Paving the way for personalised treatments at Queen Mary University of London

32 Member Charity Updates

Collaboration between Plymouth University and Imperial College leads to new clinical trial

16 Unique success stories from our wonderful fundraisers 18 Meet your Community Fundraising Team and find out how they can help you in your area!

28 Speaker’s House Reception raising awareness at Westminster during Brain Tumour Awareness Month

34 Set up an online Tribute Fund celebrate the life of someone special 35 Forever In Our Hearts Image © Alan Strutt

4 Embracing growth and focused on the future, together our Chief Executive reflects on progress

Cover story 12

Going the distance: The Nicki Waterman Kerala Challenge

COVER HIGHLIGHTS 10

Do Lunch! – Host a super Summer get-together on 1st July

25 Collaboration

between Plymouth University and Imperial College leads to new clinical trial

30

Task and Finish working group holding the Government to account

Written and edited by: Natasha Pile, Crispin Zeeman, Natalie Binder & Sue Farrington Smith at Brain Tumour Research, Suite 3, Shenley Pavilions, Chalkdell Drive, Shenley Wood, Milton Keynes MK5 6LB. Printed by: BCQ, 1 Osier Way, Swan Business Park, Buckingham, Buckinghamshire MK18 1TB www.bcqgroup.com Designed by: Clearthinking Creative, 51 Church Street, Hungerford, West Berkshire RG17 0JH www.clearthinkingcreative.co.uk Cover image and photos of Kerala Challenge on pages 12-13 © Alan Strutt www.braintumourresearch.org Summer 2017

3

EMBRACING GROWTH AND FOCUSED ON THE FUTURE, TOGETHER Our Chief Executive reflects on progress

The launch of our newest member charity, ‘In Sue’s Name’, earlier in the year made me realise how far we have come. It was inspiring to see a family and a community come together as a force for good having experienced tragedy and devastation. Their mission to raise £1 million over the next 10 years to support brain tumour research at our Centre of Excellence at Queen Mary University of London is to be admired.

Since we launched in 2009, we have played a leading role in raising awareness, developing the market for brain tumour fundraising and delivering the resulting increase in brain tumour research funding in the UK. We continue to work well with brain tumour charities and fundraisers across the UK, empowering them and campaigning together to increase the national spend on brain tumour research. The whole is greater than the sum of the parts and it is only by working together that we will achieve our vision of finding a cure.

4

In 2009, there were 40 UK brain tumour charities raising £4 million between them.

By 2016 the number of charities had risen to 81, raising £19 million to fund both research and support. Whilst for breast cancer over 100 charities raised £50 million and for leukaemia some 120 charities raised over £100 million.

Momentum is gathering for the brain tumour sector. Over the last eight years we have seen a developing and emerging

Summer 2017 www.braintumourresearch.org

market with a community that is united in seeking to improve outcomes for those with brain tumours. We are proud to work with many organisations that feel comfortable to campaign together with one voice and who, together, are significantly moving forward the cause and improving outcomes.

We admire the energy and passion that so many volunteer charities across the UK are investing in our cause in the name of their loved one and we recognise their contributions.

As a charity, Brain Tumour Research is proud of our supporters and Member Charities and all that we have achieved. We are met with respect across the community and are delighted that our unique strategy and culture is highly valued and supported by parliamentarians, researchers, patients and their families, who unite with us around our vision of finding a cure for brain tumours. Our philosophy is to encourage smaller charities, many set up in memory of a loved one, to work with each other and collaboratively with us, united with one voice. Members and supporters of Brain Tumour Research share a common vision, working tirelessly to help find a cure for brain tumours. We welcome

new brain tumour charities with open arms recognising that they will continue to emerge in a sector where devastation hits families. These emerging charities want to fill the gaps that the larger players leave untouched and they are contributing in their own way.

Whilst many of our member charities work within their local communities, we are delighted to work closely with those of our member charities who have a national reach, including brainstrust, Astro Brain Tumour Fund and the Brain and Spine Foundation.

We believe that the existence of more than one national charity is in the best interests of the brain tumour community. The continuing growth in members of our community, collaborators and number of supporters is testament to this.

TOGETHER WE WILL FIND A CURE.

Sue Farrington Smith MBE

We are the only

NATIONAL CHARITY

dedicated to funding continuous and sustainable research into brain tumours

www.braintumourresearch.org Summer 2017

5

WEAR A HAT DAY 2017

It’s official...

was the HATTIEST yet!

You took part in your thousands; crafting, posing, baking, dancing and quizzing your way through an incredible variety of creative and inspiring events.

Your support will help us continue funding our sustainable research into brain tumours.

THANK YOU Together we will find a cure.

See next y you ea Thur r on s 29 th day Mar 2018 ch !

Thank you to these HATTASTIC organisations who supported 6

Summer 2017 www.braintumourresearch.org

Wear A Hat Day 2017 nationwide: www.braintumourresearch.org Summer 2017

7

FUNDRAISING GROUPS

Fundraising Group updates A warm welcome to The Micky Deans Trust...

Micky Deans was just 49 years old when he passed away from a glioblastoma multiforme (GBM) in August 2016. Mick left behind his wife Louise and two children, Lily and Harry, who were 18 and 15 respectively when he died.

Mick had a close-knit group of friends, known as The Lads, who all got together aged 14 at Smestow Secondary School, remaining firm

friends right until Mick passed away. Even today, The Lads and their wives and children are a great support to each other and to Louise as they continue to grieve for Mick.

Louise has established The Micky Deans Trust to raise much-needed funds and awareness for Brain Tumour Research in her husband’s honour.

She said: “I want people to know what Mick went through because he kept so many things from everyone. It’s terrible that people have to

one head-shave, three haircuts, a team abseil, coffee morning, car boot sale and merchandise sales! The group also received donations from friends in lieu of buying Christmas cards.

Leah’s Fairy Fund

Last year, Leah’s Fairy Fund became one of our newest Fundraising Groups. Leah Martin was diagnosed with a high-grade medulloblastoma at the age of two. She is now tumour-free, however the extensive treatment she received has left her with long-term side effects which she must overcome daily.

Leah’s Fairy Fund, established by Leah’s mother Jo, has been set up to raise vital funds and awareness for research into this devastating disease. It’s been a whirlwind first year, with an entire community rallying to support the family in their aims.

In December 2016, they launched their ‘Penny Challenge’ – encouraging supporters to fill a jar with coins for one year and donating the contents at the end of the year!

This awesome group’s first year total topped a fantastic £5,000 and we can’t wait to see what Jo and the team will do next. Our warmest thanks to Leah’s Fairy Fund and their loyal and motivated supporters!

FIND OUT MORE:

www.fairyfund.org

The list of events and fundraising activities is varied and extensive and includes: 8

Summer 2017 www.braintumourresearch.org

go through the torture he did and that there aren’t more effective treatments, let alone a cure.

We have set up the Micky Deans Trust to raise funds for Brain Tumour Research to bring hope to families in the future.”

Read Micky Deans’ full story on our website:

www.braintumourresearch.org/ in-our-hearts

Wendy retells her adventure in her own words

Wendy McMahon established The Glenn McMahon Foundation in memory of her beloved husband, who passed away in June 2015. The Glenn McMahon Foundation has already raised thousands for vital research and last year, Wendy took on her latest personal challenge to boost this even further.

FIND OUT MORE:

www.justgiving.com/wendy-mcmahon5

Our incredible Fundraising Group, Loubob’s Legacy, was established in 2014 in loving memory of Louis Kenney, who passed away at the age of 13.

The ‘LouKrew’ has gone from strength-to-strength ever since and has raised tens of thousands for vital research.

From epic zip-lines and cycle rides to family fun extravaganzas and Christmas fayres...

They smashed their ultimate target for 2016, raising over a phenomenal £50,000!

A highlight of the year for Aylee Penn, Louis’s mother and founder of Loubob’s Legacy, was the opportunity to meet multi-million selling nu metal band, Korn, at a gig in December.

The band was more than happy to wear the group’s wristbands and pose for a photo!

An incredible and fitting way to raise awareness in memory of a very special little Rockstar.

FIND OUT MORE:

www.facebook.com/ loubobslegacy

Together we will find a cure www.braintumourresearch.org Summer 2017

9

Do a BBQ Lunch!

Set a ÂŁ300 target and aim to smash it!!

FREE

tea towel for organisers! please email

dolunch@braintumourresearch.org 10 Summer 2017 www.braintumourresearch.org

Do a a three course Lunch!

DO LUNCH!

Host a Summer get-together on Saturday 1st July 2017

Do a Picnic Lunch!

Summer is fast approaching, the days are getting longer and warmer, it must be time to Do Lunch!

We want you to get together with your friends, family and colleagues on Saturday 1st July 2017 and grab some grub for Brain Tumour Research to help feed vital scientific breakthroughs !

Whether it’s a BBQ bonanza, a perfect picnic or a three-course lunch, all funds raised will support long-term, life-saving research at our Centres of Excellence.

.

NCH! EVENTraffl LU O D R U YO R FO e tickets PS TI ISING 5. Outdoor games and TOP FUNDtarRA or BBQ why nic pic r you up Text to donate ce 3. spi To e get ryone you 1. Set a fundraising e and tell Create a JustGiving pag draising. fun ’re you y wh of the story beat it! to aim n the , Set your target

2. Shout about it! ead the word Use social media to spr your event. und aro z and generate buz ebook. Tweet Create an event on Fac ram #DoLunch! and also post on Instag r pics -email you us d sen to Don’t forget them to: esearch.org dolunch@braintumourr

eve It’s so simple – just ask 60 to donate 706 to RE CU t tex know to y!* eas t tha £5, it really is r guests 4. Charge a fee for you a picnic, for h eac £5 t We sugges each for £10 each for a BBQ, £30 a three-course lunch.

to play som not charge a small fee l raffle tickets? sel and es outdoor gam Find out more: arch.org/DoLunch www.braintumourrese ise 6. Do Lunch! Merchand accessories to ful use of ge ran a Browse increase and nt eve r you h help you wit e sam the your fundraising at n gloves, aprons, time – tea towels, ove to see more: te bsi we our sit mugs...Vi Lunch rresearch.org/Do www.braintumou *Texts cost £5 plus network charge.

Brain Tumour Research receives 100% of your donation.

Obtain bill payer’s permission.

Customer care 01908 867200.

www.braintumourresearch.org Summer 2017

11

Denise Van Outen and Jemma Pike

The Kerala Challenge

Choose your challenge

www.braintumourresarch.org/calendar-of-events

L-R: Simon Tier,

Team n Kerala Challenge The Nicki Waterma

12 Summer 2017 www.braintumourresearch.org

Georgia Bright leading the team

On 11th March 2017, an intrepid team of supporters set off on the cycling challenge of a lifetime. The Nicki Waterman Kerala Challenge — a five-day journey, covering 187 miles across southern India.

The team was completed by Brain Tumour Nicki Waterman was Research activists Simon Tier and Emma The Sun newspaper’s popular fitness expert and just 53 years old Barclay — both having experienced the tragedy that a brain tumour diagnosis when she passed away from an aggressive brain tumour. Nicki was can bring. Simon has been campaigning and fundraising since 2011, when his best loved by many and after her friend Alan Neilson was death, just 15 months after first diagnosed with a diagnosis, her daughter brain tumour. Alan sadly Alex Thrussell established passed away aged 47, in The Nicki Waterman November 2015. Emma Foundation. Soon after, Barclay lost her fiancé Nicki’s close friend, Denise Nicki Waterman and and father of their two young children, Adam, on Van Outen decided to build Alex Thrussell New Year’s Day 2016, just a team to take part in the weeks before they were due to marry. She Kerala Challenge, fundraising is now determined to help Brain Tumour in Nicki’s memory.

The team departing for India from Heathrow Airport

However, all the while they were inspired to continue with thoughts of how the money raised would make a difference to the lives of brain tumour patients. The amazing team completed their challenge on Friday 15th March 2017 with mixed feelings of relief, exhaustion, sadness and pride. TOWIE’s Georgia Bright summarised: “Tears of pure happiness (I can’t stop crying). A huge sense of achievement as we crossed the finish line.

Research find a cure in Adam’s memory.

For those we have lost and never will forget.

The Nicki Waterman Foundation exclusively Emma and Simon won The Sun on Sunday’s I have pure admiration for my team, each supports Brain Tumour Research. Through its reader competition, which offered the chance of their stories have touched me individually mission of raising funds and awareness for to join this epic challenge, all expenses paid. and I love each and every one of them!” brain tumours, it hopes to prevent families The journey was certainly not smooth cycling The Nicki Waterman Foundation has raised in the future facing similar devastation. for the team, who were pushed to their over £50,000 for Brain Tumour Research.

The 18-strong team that took part in the physical and mental limits: bruises and A figure only set to rise as they continue to Kerala Challenge included famous faces blisters, panic attacks and twisted knees were fundraise in Nicki’s memory.

Kate Thornton, Michelle Heaton, TOWIE’s worsened by the emotional highs and lows A fitting legacy for an incredible woman.

Georgia Bright and X Factor’s Kye Sones. endured along the way. Michelle Heaton Many knew Nicki personally and wanted to told her Instagram following: “I fell off the do something significant in her memory and bike every day... Been bitten by mosquitos so FIND OUT MORE: create a lasting legacy in her name. Also on many times I look like a dot-to-dot picture... www.justgiving.com/teams/ Nicki-Waterman-Foundation the cycle ride were Good Morning Britain’s Ripped the skin off my hands, knees, legs, Jane Witherspoon who lost her dad last year, along with Hayley Costa who lost her mum, days after giving birth to a grandchild.

Emma Denise Van Outen and

arms. Pulled my back... Ruined all my clothes... And missed my husband and kids so much it’s made me break!” ise Van Outen

Kate Thornton

Alex Thrussell and Den

Barclay

Michelle Hea ton

www.braintumourresearch.org Summer 2017

13

ON YER BIKE 2017

ANOTHER GREAT YEAR OF ON YER BIKE SUCCESS STORIES!

On Saturday 25th February 2017, hundreds of enthusiastic fundraisers got pedalling for our second national On Yer Bike spinathon event. Supporters across the UK came together for this fun and physical challenge; some organising events at their local gyms and community centres and others, in the comfort of their own homes.

Our biggest thanks to each and every one of you who took part this year, you have helped us fund the fight against brain tumours.

Blackburn:

Karl Eltman sadly lost his Mum, Susan Eltman, to a brain tumour in May. He organised a spinathon with a twist at DW Fitness Audley, in Blackburn, to raise funds in her memory. A fantastic 40

FOR BRAIN TUMOUR RESEARCH

Here is a snapshot of the action from On Yer Bike 2017!

people took part and to spruce things up a little, every hour they had different themed music; from eighties to northern soul and rock classics. The usual shorts and Lycra were even combined with fancy dress – wigs and sweatbands all round! They received donations of over £3,500, smashing their target and raising enough to fund a day of research and place a tile on one of our Walls of Hope.

An awesome team effort.

Leeds continued:

Buckingham:

Brain Tumour Research Chief Executive Sue Farrington Smith joined forces with 14 other charity supporters at Swan Pool in Buckingham.

Local companies generously gave bottles of water and Mars bars to help fuel them through the grueling two-hour pedalling session. There were sore bums all round by the end of the event, but the team were still smiling and raised nearly £2,000, including Gift Aid. The day was finished off nicely by a timely delivery from Direct Pizza, which was very much appreciated!

Leeds:

Rory Burke was diagnosed with a brain tumour aged 40 and at the time of his event, was mid-way through chemotherapy and radiotherapy treatment. Despite this, he jumped at the chance to get on his bike for Brain Tumour Research. He raised over £3,500 and completed his challenge at home in Leeds.

14 Summer 2016 www.braintumourresearch.org

Cathy Pratt raised an amazing £1,200 at her second On Yer Bike event. She chose to support Brain Tumour Research as her husband Andrew died 12 years ago from this devastating disease. Event participants included friends Julie Hanlon, Georgina Ross, Marrissa Martyn and Maria Browne, who also lost her husband Michael to a brain tumour.

Cathy said: “This was our second year taking part and we had a fantastic day; full of laughter, enthusiasm, pain, sweat and a few sweets thrown in for good measure. Everyone is already wanting to do the next one!”

1in 50

people who die

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

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

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

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

Saturd 4th Februay ary

(under the age of 60)

die of a brain tumour

2018

London:

Ruth Owen and her spinastic team including friends Jude Owen and Lucy Wood, raised almost £6,000 Together at Jubilee Hall we will gym, London!

find a cure

Luton:

Dedicated Brain Tumour Research supporter Jane Barltorp and her daughters Alice and Emma got on their bikes and rode in memory of their beloved husband and dad, Mike Barltorp. Their event took place at Lewsey Sports Park, Luton, with 13-15 people cycling at any one time!

Jane said: “We kept our energy levels up with bananas, energy biscuits and endless bottles of water in between sessions and all agreed it had been great fun. We raised over £670 and are planning this to be an annual event in Luton!”

Wigan: Oxford:

Zoe O’Hanlon, a spin teacher at Body Training Studio, Oxford, wanted to raise money for Brain Tumour Research after her step-brother died of a brain tumour. The son of one her class members also passed away from the disease, so this was a cause very close to her heart. Zoe was joined by team members Chris Morgan and Kirsty Denham.

They raised over £1,400!

James Hinnigan, a brain tumour patient and dedicated supporter of Brain Tumour Research, held his second On Yer Bike event at Xercise4Less in Wigan. James was joined by a large team, including old school friends and rugby team mates. This great group collected donations on their JustGiving page and on the day.

The generosity of the local community and match-funding both contributed to a fantastic total of £2,165.

www.braintumourresearch.org Summer 2016 15

FUNDRAISER STORIES

NGE SAMMI’S SMARTIE CHALLE Sammi Wise chose to fundraise for Brain Tumour Research after her family was affected by a brain tumour diagnosis. Sammi’s close friend Judith Cottam told her about Brain Tumour Research as she had also experienced the devastation of this disease. They are united and determined to do all they can to help find a cure.

tube of Smarties as long as they did one thing – fill the tube back up with 20p pieces!”

The Smartie Challenge proved extremely popular and Sammi had to buy 160 tubes in total; her partner Calvin also took some to his colleagues in the Cumbria police force. Sammi’s father Martin also provided a vital service in the transportation Amongst other fundraising activities, Sammi of the heavy bags of coins! Following their established ‘The Smarties Challenge’ at her overwhelming success, Sammi and Calvin spent workplace: “I originally bought 20 tubes of long nights counting money and were amazed to Smarties and put them out on the side of my desk raise over £2,000. An awesome team effort. along with a poem, I told people to take a free

Please take a tube of Smarties to eat, As everyone loves a chocolatey treat,

But what I ask of yo u generous lot, Is for contributions towards my charity pot,

Please write your na me on the kind person lis t, So I can make sure that your help won’t be missed,

Twenty pence coins are the ones that I seek , The challenge is to fil l it up in 4 weeks

HAVING A BALL IN STEWKLEY Lester Corkett was already planning his 65th birthday celebration, when in early April 2015 he was diagnosed with a glioblastoma multiforme (GBM). He was given just 2-3 weeks to live and died on 15th May 2015, aged 63.

where Julia grew up and the family had lived for 24 years. There was a three-course meal, dancing to a local band, an auction of 11 lots and a large raffle; the bar also donated all the profits from the evening.

To mark the occasion of his 65th birthday his widow Julia, daughters Eleanor and Jess, along with a group of friends, decided to hold a charity ball to raise funds and awareness of this devastating disease. On Saturday 4th February 2017, 140 guests attended the event at Stewkley Village Hall, in Buckinghamshire. The village

Tickets sold out within 48 hours of being released and the family are grateful to so many friends, acquaintances and local businesses for their generosity and support. An incredible total of £5,700 was raised at the event.

A wonderfulgift to Brain Tumour Research in memory of Lester’s 65th birthday.

16 Summer 2017 www.braintumourresearch.org

SUSAN’S FUND SHARE YOUR FUN-draising successes and photos with us!

Susan Hebson was just 58 when she passed away from a glioblastoma multiforme (GBM) in November 2015, five months after diagnosis. A much-loved member of her local community in Penrith, Susan’s family and friends have been determined to help Brain Tumour Research find a cure for the disease that took her so prematurely.

Susan’s 22-year-old daughter Jodi, together with family and close friends joined forces to raise money in her memory and fight for much better research and awareness through Susan’s Fund.

The total raised in this period tops an awesome £32,000!

Our warmest thanks to Susan’s Fund and all who support them in their incredible efforts to ensure that families in the future won’t have to face the same devastation that they have.

Find out more: facebook.com/susansfund66

In the last 12 months, supporters have undertaken a wide and exciting variety of fundraising activities including a Band Bash, Rock the House choir event, beauty sessions, a charity auction, fashion show, coast-to-coast cycle ride, 24-hour football match and a special ‘Swim for Sue’ swimathon.

www.braintumourresearch.org Summer 2017 17

FUNDRAISING

Meet your Community Fundraising Team!

Brain Tumour Research is proud to have a dedicated and motivated team of community fundraising managers across the UK. Their job is to help make your fundraising a success. Whether that’s by giving you some inspiring ideas, helping you to set up a JustGiving page or passing on tried and tested fundraising tips; they are here for you! Please get in touch with the community fundraising manager nearest to you if you’d like assistance, advice or simply a friendly chat – they can’t wait to hear from you. at events encourages others to understand the need for funding so that they want to become involved with other fundraising activities too.”

CHOICE EVENT Great North Swim Saturday 10th June 2017

Carol Robertson

Head of Community Fundraising How did you become a fundraiser?

“Back in 2000, my good friend Andrea Key was diagnosed with an aggressive brain tumour. I was appalled by the lack of funding and research into the disease so started that very day raising funds for this cause. That same year I met Brain Tumour Research CE Sue Farrington Smith, shortly after her niece Ali had died from a brain tumour – the rest is history!”

What motivates you? “The amazing people I meet who are affected by brain tumours. Ian Meek was one such patient; I became really close to him and his family and when he died in 2012, my motivation became to raise more funds so that others don’t suffer in the same way and can survive with a good quality of life.”

Carol’s top fundraising tip “Do whatever you do with passion and have fun doing it!”

CHOICE EVENT Yorkshire Marathon Sunday 8th October 2017

carol@braintumourresearch.org 07817 878407

Sara Eltman

sara.eltman@braintumourresearch.org 07590 847355

Area: North West England & Northern Ireland How did you become a fundraiser?

“My first role in fundraising was in 2005 at a children’s hospice in Lancashire. Having worked in the public sector as a police officer and in various customer service and sales roles I enjoyed a challenge and working with a wide range of people so this seemed a good fit. I found that working within the charity sector was really rewarding as you are able to see the people you are supporting each day.”

Do you have a personal connection to the cause? “I very sadly lost my mother-in-law, Susan Eltman in May 2016 following a brave battle with a brain tumour.

Seeing the effects this disease had on Susan, my husband and the rest of the family has given me some understanding when talking to others in a similar situation and helping them with their fundraising activities in memory of loved ones.”

Sara’s top fundraising tip “I would say that fundraising is great when it is fun and engaging for the people taking part!

If the activity is enjoyable and memorable then this always seems to be successful. Also, finding ways to raise awareness of the charity

18 Summer 2017 www.braintumourresearch.org

Paula Rastrick Area: Central England

How did you become a fundraiser?

“I have been a fundraiser since the age of eight when my friend Fay got leukaemia.

I did some carol singing and raised £2.85 for Leukaemia Research. That was the start of my love of fundraising.”

Do you have a personal connection to the cause? “A few years ago I was working with a lady who was in full recovery from breast cancer. She retired and started enjoying her life. I was pregnant with my youngest child at the time. She then got the diagnosis of secondary brain tumours. I was given the devastating news that she

Volunteer for us had 10 weeks left to live; I also had 10 weeks left of my pregnancy. I found myself excited about seeing my child but not wanting that time to pass. On 22nd December 2006, we were both in the same hospital. I was told later she had died just as I started in labour. My son was born in the early hours of the 23rd December.

She brought a little angel for me.”

Paula’s top fundraising tip “If you don’t ask, you don’t get, be a little bit cheeky!”

CHOICE EVENT Grand Union Canal Walk Saturday 30th September 2017

paula@braintumourresearch.org 07710 390796

Do you have a personal connection to the cause? “My fundraising really kick-started in January 2005 following the death of my best friend, Tom, from secondary brain tumours. Within two years, the charity set up in his name had raised £250,000 and I knew I wanted to do this full time.”

What motivates you?

“Waking up every morning knowing that I can make a difference to brain tumour patients and their families. It doesn’t matter whether I am working with a fundraiser with a target of £25 or £25,000; I will ensure they have all the tools and guidance they need to make their journey with Brain Tumour Research easy, enjoyable and worthwhile.”

Tim’s top fundraising tip “Always ask for help and never think that yours is a silly question. I am a phone call or email away with your answer and if I don’t know, I will know someone that does.

Always ask and remember it’s very likely that your question has been asked before.

We just want to help!”

CHOICE EVENT Spinnaker Tower Abseil Saturday 9th September 2017

tim@braintumourresearch.org 07802 724310

Tim Green

Area: South East England How did you become a fundraiser?

“I began fundraising by chance, back in 2002 when I was at school but wanted to give back to the Portsmouth MS Rehabilitation Centre that was helping my father with weekly treatment.

It was important for me to be able to fund two pieces of particular equipment. I got the taste for fundraising and it has stuck with me ever since – I wouldn’t change it for the world!”

Peter Jordan

Area: South West England How did you become a fundraiser?

“I’ve been a volunteer for 35 years and involved with charity work for the last 15 through my old job and personal involvement. I wanted to work for Brain Tumour Research to help find a cure for the illness that took my dad away from me. He passed away from a glioblastoma multiforme (GBM) in April 2013.”

Peter’s top fundraising tip “No matter how silly the idea of how to raise money, go for it. Every little helps.”

CHOICE EVENT Exclusive “A Night at the Zoo” event at Dartmoor Zoo Monday 5th June 2017

peter@braintumourresearch.org 07809 701228

Watch this space for the announcement of our new Head of Community Fundraising

for Nothern England and Scotland, and our

Community Fundraising Manager for London!

www.braintumourresearch.org Summer 2017 19

INSPIRATIONAL SUPPORTERS When Chief Executive Sue Farrington Smith established Brain Tumour Research in 2009, with the support of a group of fellow charities and brain tumour activists, they had a huge ambition to raise the profile of and the funds being spent on brain tumour research in the UK. The charity has grown rapidly in the subsequent years, with four out of seven of Brain Tumour Research’s planned Centres of Excellence having already been established. None of this would have been possible without the support of some incredible individuals. Now mid-way through another landmark year for Brain Tumour Research, we spoke to four of the amazing activists who have been on the charity’s journey since it started; we asked how they feel about progress made so far and where they see the future leading.

SUE HILTON

Our daughter Amanda died

in November 2010 following

the diagnosis of a

glioblastoma multiforme

(GBM) tumour in the June.

Despite the best possible

treatment available she could not be saved. She was just 39 and left two young children and her partner.

During her time in hospital I saw a Brain Tumour Research leaflet pinned to a notice board and this was the first time I was aware of the charity. It was after her passing that we became more interested in Brain Tumour Research via the internet. We were very surprised to learn how little had changed in the treatment of brain tumours over the years and even more alarmed at the number of young people who are affected and who die as a consequence.

So as a family, we decided to raise as much money as we could in the hope that the research it would support would mean less people suffer in the future, as we had.

To date, we’ve raised in excess of £18,000 for Brain Tumour Research. This is our proudest achievement

and includes money raised by friends, my husband’s golf club and Amanda’s work colleagues and sisters, Caroline and Lynsey. I was also able to raise significant awareness during my year as lady captain of Boyce Hill Golf Club, where Brain Tumour Research was my chosen charity.

Through our experiences with Brain Tumour Research, we’ve found that talking to others about this devastating disease is helpful. The charity provides a focal point for anyone to express their views and experiences about brain tumours. Brain Tumour Research’s website and social media are great platforms to facilitate this discussion. In turn, these collective voices have enabled Brain Tumour Research to put increased pressure on the authorities to provide more funding into research.

I am amazed at what Brain Tumour Research has achieved in such a short time. The hope was always that the charity would become as prominent as others for breast cancer and leukaemia. I think that Brain Tumour Research has successfully highlighted the need for more funding and resources. Prior to this, very little was being done. The main thing now is that brain tumours are headline news and people are listening.

However, while funding progress is being made, we still need to gain a better understanding of brain tumours and improve the treatments that are available. This can only be achieved by attracting bright, young people into brain tumour research. It is so important that such people feel they can have a career future in this field and why proper ongoing, meaningful funding is so essential.

20 Summer 2017 www.braintumourresearch.org

BARBARA SHAW I became interested in raising funds to progress brain tumour research immediately after the death of my beloved husband, Colin. He was diagnosed with an aggressive glioblastoma multiforme (GBM) in January 2009 and died in August 2010. He was just 70 years old. We miss him terribly and I have great sadness that he never had a chance to meet our two grandchildren, born to our youngest daughter, Rebecca.

Driven by our loss, I wanted to help Brain Tumour Research fund their vital research so that eventually, hopefully soon, no-one else will have to go through what Colin did.

I firmly believe that the charity’s success so far is due to the dedication to the cause shown by the Brain Tumour Research team, which encourages the rest of us to rally round and help ensure that progress continues to be made towards finding a cure.

One of my proudest moments so far has been getting my local MP to take part in Wear A Hat Day at Parliament. Both he and the Deputy Mayor of Lowestoft have attended events I’ve organised and I’m very grateful for their kind support. I was also extremely proud when my local primary school took part in Wear A Hat Day – all 200 of them!

I think that the greatest challenge(s) in the fight to defeat brain tumours is the fact that not many people are aware of how common they are, and of course the pathetic funding brain tumours receive. I hope that Brain Tumour Research will continue to make great progress into discovering better treatments and also learn more about how to detect brain tumours earlier; preventing many from having to endure the suffering of a brain tumour diagnosis.

FIGEN RAWLINSON In August 2009, our eldest son Taylan sadly passed away at the tender age of just seven to a DIPG brain tumour. Everything seemed to happen so quickly and we felt lost as well as being broken. I decided to try and focus on what we could do now to continue with Taylan’s legacy. I did some research and liked the ethos of Brain Tumour Research, so I decided to give them a call. Sue Farrington Smith answered the phone and we spoke for quite a while. Her passion and determination in trying to help find better treatments and a cure made me smile – something I hadn’t done for a very long time and I wanted to be a part of this journey – as I owed it to Taylan. In 2010 we established Taylan’s Project, which became the charity’s first Fundraising Group. We’ve witnessed this wonderful organisation grow from a small office with two people, into what it is now – in just seven years!

My proudest achievement so far has been when I was chosen as ‘Gold Torchbearer for BMW’ in the 2012 Olympics. Taylan loved playing sport, so to carry the Olympic Torch in London in his memory, for all others who have been affected by a brain tumour, was an incredible honour. A very emotional day but one that will stay with me forever.

I am so proud to be part of a team which is incredibly passionate about what they do. The team at Brain Tumour Research genuinely care; they all work hard and they listen but most importantly they all have incredibly big hearts, being driven by the fact that they know they are part of a large loving family that needs to work together to get results.

The greatest challenge we continue to face is to increase the funding given to brain tumours by the Government. Brain Tumour Research has been campaigning for many years now and

whilst their voices are starting to be heard within the walls of Westminster, the Government needs to act faster. The brain tumour community is very closely knit and there are many incredible scientists out there – but without funds, they cannot do their jobs.

I truly believe that Brain Tumour Research will be the ones to increase Government and larger cancer charity funding to £30-35 million a year, which is what is required to make a real change and will also bring funding in line with other cancer research. They are the leading voice in campaigning for funds, better treatments and awareness and I know they will continue to grow from strength to strength over the coming years.

KAREN TIMBRELL work they do. I particularly liked that their money goes directly into lab research; research into the causes and cures is what is desperately needed.

I believe this, together with the passions and commitment of the team at Brain Tumour Research has been the key to their success.

My daughter, Holly, was diagnosed with an inoperable tumour in 2009 at the age of 13. It was such a shock to the whole family and I had never even heard of anyone with a brain tumour before – it was so frightening. I was blaming myself; it must have been something I did when she was a baby, or something I gave her etc. I was dismayed to find that there were no answers, and that is when I found out about Brain Tumour Research and the

This shared dedication is what inspired me to fundraise for the charity and I am immensely proud of the relentless support of many, many friends and family in all of our fundraising efforts.

The greatest challenge in the fight against brain tumours is still the funding; there are so many different types and because of the blood-brain barrier, brain tumours often don’t benefit from general cancer research being undertaken.

This is why brain tumours need more dedicated, site-specific research. I will continue to support

Brain Tumour Research’s Centre of Excellence model as sustainable research is what’s required if we are to make progress and rid the world of this horrible disease.

www.braintumourresearch.org Summer 2017 21

RESEARCH INTERVIEW

BEATING THE BLOOD-BRAIN BARRIER interview with Research Fellow, Dr Zaynah Maherally

We are building a network of experts in SUSTAINABLE BRAIN TUMOUR RESEARCH

Sponsor days of research at UK Centres of Excellence

To achieve our mission, we need to nurture and encourage talented young researchers in the field of neuro-oncological research, if we are to make significant progress into finding a cure for this devastating disease.

Research Fellow, Dr Zaynah Maherally, undertook her PhD within our Centre of Excellence at the University of Portsmouth (UoP) and has been based there ever since.

It is thanks to your support that she can continue her vital research into pioneering treatments for brain tumours. We spoke to Zaynah about her career so far and what she imagines for the future of brain tumour research.

22 Summer 2017 www.braintumourresearch.org

Brain Tumour Research: When and how did you decide you wanted to pursue a career in scientific research?

Zaynah: I was doing my internship at the Hospital of Kuala Lumpur in Malaysia and was posted in the cytology unit. From there I was seeing oncology patients for biopsies almost every day.

That experience deepened my interest in scientific research but more specifically in oncology research.

Brain Tumour Research: What appeals to you specifically about working within the field of neurooncological research?

Zaynah: The challenge – brain tumours behave differently compared to other cancers and it’s vital that we learn why the prognosis for brain tumour patients is so poor. Also, the reward of knowing that every step brings us closer to finding a cure, giving hope to many patients and their families.

Brain Tumour Research: How did you first get involved with the University of Portsmouth and how has this helped to shape your career?

My work includes exploring the mechanisms for how some types of cancer cells spread to to the brain. Unfortunately, many treatments for cancer in the body, such as chemotherapy, are delivered through the bloodstream and the blood-brain barrier (B-BB) prevents these from crossing into the brain. The B-BB is a powerful protector for the brain, guarding it against toxins travelling in the blood.

Knowing that the animal model of the B-BB did not directly relate to the human brain, we have created a unique, three dimensional, all-human version that can be used by researchers in the lab.

This model uses only human brain cells, human brain glioma (tumour) cells and human serum.

Having this exclusive model of the B-BB is enabling me to carry out leading research at the University of Portsmouth into the genetic control of brain tumours and test ways in which to deliver potentially new therapeutic drugs to target brain tumour cells.

The exposure and expertise gained here at Portsmouth has deepened my drive to carry on this ongoing battle to find a cure for brain tumour patients.

Brain Tumour Research: In your opinion, what is needed to progress research into brain tumours on order to achieve similar survival rates and more effective treatments (similar to those available for breast cancer patients)?

3. Focused collaborative work across the UK – so as to progress and not waste time and resource repeating the same research. It’s great to see how Brain Tumour Research is helping develop these sorts of collaborations and leadership meetings through their annual scientific research workshops.

4. Not so stringent (in a good logical and realistic way) in clinical trials, it takes years to even get a drug into clinics.

Brain Tumour Research: Where do you hope to be in five years’ time?

Zaynah: I strongly believe that the opportunities here at UoP such as setting up national and international collaborations, learning of the current challenges and novel techniques used to devise therapies to treat brain tumours, as well as interacting with key leaders in brain tumour research, will further help expand my interest in brain tumour invasion and metastasis, as well as contributing to my understanding of this debilitating disease.

I am confident that I will be sufficiently equipped to develop into a principal investigator in brain tumours in the future.

Zaynah: I finished my MSc in Biomedicine at the Curtin University in Australia and was looking for a PhD in the UK with a specific focus on cancer research in humans. I was offered a place with Geoff Pilkington, Professor of Cellular and Molecular Zaynah: Neuro-Oncology at UoP. My PhD studied some 1. Funding – more funding is of the key components associated with the desperately needed to inject into development and spread of tumours within the sustainable research. brain. In particular, I focused on two proteins which are present on the surface of tumour cells – 2. More specific brain tumour CD155 and CD44 – which both play a role in the meetings where leaders meet invasion of tumour cells into surrounding areas and discuss up-to-date questions, of the brain. If we understand the key factors answers and the way forward associated with this process, we may be able to based on this. develop new drugs which will prevent it.

www.braintumourresearch.org Summer 2017 23

RESEARCH UPDATES

RESEARCH NEWS FROM OUR Paving the way for personalised brain tumour treatments National brain tumour research funding needs to increase to £30-35 million a year

In an ambitious project, Brain Tumour Research’s Centre of Excellence at Queen Mary University of London (QMUL) is currently tackling the issue of patient-specific therapies.

This project relies on living cells that can only be obtained from patients during brain tumour surgery. An important aspect of this project is the pairing of cancer cells with normal cells from the same patient. Over the last few years, the team at QMUL has developed a method to achieve this. This study is very costly and it is essential that the right tissue is used in the research project.

The team at QMUL works in close partnership with Neuropathologist Professor Sebastian Brandner at University College of London (UCL) and Dr Jeremy Rees, a Consultant Neurologist at the adjacent The National Hospital for

Tedani (at the cell culture incubator) and Natasha (at the microscope) in the tissue culture laboratory, growing cancer stem cell cultures from human brain tumours

Neurology and Neurosurgery (NHNN).

They identify and approach suitable patients for the study and ask them whether they would be willing to take part. Already during a patient’s operation, Sebastian and his colleagues make a preliminary diagnosis by looking at the tissue sample under a microscope; more detailed information confirming the type of brain tumour being available usually in two days. Further detail is required to be certain that the right subgroup of high-grade gliomas, i.e. the glioblastoma multiforme (GBM), is evident in the culture. This confirmation comes approximately one to two weeks later using DNA-based molecular tests, which further subclassifies the GBM. Highly specialised, in-depth scientific data about the individual subtypes of GBM are

24 Summer 2017 www.braintumourresearch.org

needed to understand its biological behaviour.

To achieve this, the researchers in Professor Brandner’s laboratory use a method to get the most detailed and accurate information about each individual tumour subtype. They conduct a complex analysis of the DNA from the tumour, examining hundreds of thousands of ‘points’ in the genome, which may be changed by an event called methylation. These data are then fed into a supercomputer, which compares them against a large database containing existing information on brain tumours and informs us to which GBM molecular subgroup the tumour belongs.

This technology, which is an important and novel addition to precision diagnostics in neuropathology, is available only at a few institutions in the UK, including the NHNN.

CENTRES OF EXCELLENCE Collaboration leads to exciting new clinical trial We are striving to fund a network of seven dedicated research centres in the UK

One of the challenges to finding a cure for brain tumours is to identify specific changes between the cancer cells and normal cells within the brain which can act as targets for the action of new therapies. Schwannoma and meningioma are two types of low-grade brain tumour being investigated by the research team at our Plymouth University Centre of Excellence.

The team there is led by Professor Oliver Hanemann.

Working closely in collaboration with Dr Nelofer Syed (pictured) – who heads up the laboratory research team at our Imperial College Centre of Excellence – Professor Hanemann published a paper recently in the journal EBioMedicine, comparing the profile of these tumours and normal cells.

Using state-of-the-art techniques, they identified specific changes in the

tumour cells and, significantly, have determined how to overcome the changes, stopping the tumour in its tracks! This exciting research development has brought a focus on certain drugs already used for kidney and liver cancer but never before for brain tumours.

Moving quickly is a ‘trademark’ of our Plymouth team and this discovery is now forming the basis for a new clinical trial. We’ll bring you more news of this trial when we have it.

www.braintumourresearch.org Summer 2017 25

MEET THE TRUSTEES

OUR TRUSTEES ARE VALUED AND VITAL MEMBERS OF OUR ORGANISATION. They have all been affected by brain tumours in the lives of their families or friends and this is reflected in their unwavering commitment to achieving the ambitious goals of Brain Tumour Research. Here we meet three of our trustees, all of whom have been part of the charity’s journey since the beginning. You can read about our other trustees in Believe Spring 2017. Find this via www.braintumourresearch.org/believe

SANDY SAUNDERS cdr ret

Sandy has been tirelessly dedicated to increasing awareness of brain tumours since his eldest daughter, Diana, passed away in 2002. A leading figure in the brain tumour community, he and his wife Rosemary initially established the Diana Ford Trust, raising funds to begin building the critical research mass required to combat this devastating disease.

Sandy started his career with a Short Service Commission in the Royal Navy. He then took up a post in manufacturing industry before moving to McKinsey as a Management Consultant advising multinational organisations on their future strategy. He was subsequently invited to become Chairman of some 20 publicly quoted companies to lead the re-focusing of their activities. He was awarded the Freedom of the City of London in 1985, and Master of the Tin Plate and Wireworkers Livery Company in 2007.

On retiring from the City, he was asked to serve as Chairman of the Local Civic Society, which led to his election as a Town Councillor and later, Mayor of Beaconsfield. He was also Chairman of the Buckinghamshire and Milton Keynes Association of Local Councils. These roles have helped Sandy to strengthen his impact when spreading awareness of brain tumours. His strong personal and business connections both in the City of London and in the Thames Valley and surrounding area have given Brain Tumour Research a bigger platform from which to gain support.

Sandy is immensely proud of all that Brain Tumour Research has achieved but knows that

26 Summer 2017 www.braintumourresearch.org

more has to be done if we are to win the fight against brain tumours: “The next important step is establishing our fifth Centre of Excellence. We must also continue to bring members of the brain tumour community together, so that we have even greater impact on government, influencing policy to allocate more funds to brain tumour research. Our role is also to ensure that research results are shared amongst scientific communities, avoiding duplication of effort, with a clear focus on where we are going and eventually of course, how we are going to find the cure.”

NIGEL BOUTWOOD

Nigel’s passion for the cause began in 1993, when his son Charlie was diagnosed with a brain tumour at just 20 months old. Though the subsequent outcome for his family was a positive one – Charlie made a full recovery and is now building a successful career in the City of London – Nigel was all too aware of how lucky they were. He established Charlie’s Challenge to help raise awareness and funds for research. to found his own full service agency, Boutwood Advertising Ltd, where he remains Chairman and Managing Director.

One of our founding Member Charities, Charlie’s Challenge helped establish our first Centre of Excellence (along with other Member Charity Ali’s Dream) at the University of Portsmouth.

Nigel’s business career commenced in 1970 when he joined the advertising agency, J Walter Thompson in London. From 1971 until 1978 he worked for Thames Television in advertising media sales before moving to Southern Television to build and grow the local television advertising market. In 1985 Nigel was inspired

Now, 24 years after his son’s diagnosis, he is still driven by his frustration over the lack of progress in global brain tumour research: “I’m pretty angry that society hasn’t yet managed to significantly improve outcomes for brain tumour patients. What we have done at Brain Tumour Research is create a successful charity which can and will accelerate progress, and that is something to be immensely proud of. I’m well aware that my family

has not suffered as much as others, we’ve been very lucky. But I could never walk away, I refuse. There is still a job to be done.”

Charlie’s Challenge continues to contribute to the funds needed to sustain our vital research into brain tumours and Nigel would like to thank everyone who continues to support both charities: “The dedication by the Brain Tumour Research workforce and all of our supporters is an inspiration and if we keep it up, I know we will ultimately beat this ghastly disease.”

ROB HUGHES

Rob and his wife Carole founded Brain Tumour Research member charity Anna’s Hope 11 years ago following the tragic loss of their daughter Anna, at just three years and eight months old.

An employee at Mars Food for 32 years, Rob held numerous positions within the sales and marketing teams. He was Managing Director of Mars Food for nine years and was also a member of the Mars UK Board and Mars European Food Board. During his last three years with the company, from 2009-2011, he was a member and advisor to the Business in the Community ‘Health in the Workplace’ Leadership team.

Rob has now been Chairman of Peterborough and Stamford NHS Foundation Trust for four years and continues to be a valued Parents and Charity

Representative for the NHS Safe and Sustainable Review of Paediatric Neurosurgery.

Having been on the board of trustees at Brain Tumour Research since 2011, Rob is always eager to offer his experience and expertise to the wider cause. “As Chair of an NHS Hospital Foundation Trust and an industry board member, I am able to bring experience and knowledge of the healthcare system, as well as strategic sales and marketing skills to the charity.”

Rob is passionate about making a difference and through the incredible work of Anna’s Hope, is helping to support the rehabilitation of children and young people with brain tumours, as well as raising awareness for brain tumours and supporting research to ultimately find a cure.

www.braintumourresearch.org Summer 2017 27

CAMPAIGNING

SPEAKER’S HOUSE On Wednesday 15th March 2017, we were joined by supporters, scientists, celebrities and MPs alike for our annual brain tumour awareness March event held at Speaker’s House Westminster.

This is an important event in our campaigning calendar; giving patients and carers a voice and enabling them to share their experience with MPs and other key influencers. It also serves as a poignant reminder of why we need to increase the national investment in brain tumour research to £30-£35 million per annum. Those gathered were particularly keen to hear from Dr Helen Campbell, who provides the secretariat to the Government’s Task and Finish Working Group. She explained that the barriers have been identified and the group is now working on how these will be broken down.

Campaign with us

Debbie recalled: “After news about Paul’s brain tumour got out we had lots of letters from people saying try this or that – and we did. But the dreadful truth was that there was nothing to be done. Paul loved life too much to just give up, we continued to share a joke until just two days before he died. After nearly 30 years of marriage, all I could do was be with him, to hold his hand and tell him that I loved him.”

MPs praised the dedication of their many constituents, especially Brain Tumour Research’s Chief Executive Sue Farrington Smith MBE, in doing all they could to improve outcomes for brain tumour patients.

Emotive speeches were also given by Bethany and Chloe Lloyd, who lost their father Steve in December 2015; Wayne Church, who lost his son Finlay at the age of 11 and Ben Anderson, a patient who was celebrating his 18th birthday that day. All speakers poignantly described how they had been affected by the disease and also highlighted the ongoing battle for greater parity of funding for brain tumours.

Guests couldn’t help but be moved when Debbie McGee, wife of the late Paul Daniels, spoke on behalf of the thousands of families who have lost a loved one to a brain tumour.

Wayne Church explained: “You never get over the loss of a child, our hearts remain broken and we are drained and exhausted. This disease does not discriminate. If there is one good

28 Summer 2017 www.braintumourresearch.org

thing to come of this it will be that more people start to sit up and listen, that more people understand the horror of this disease that takes so many of our loved ones, and that more will be done to ensure this does not keep happening to families like ours.”

Our humblest thanks to all who attended this flagship event and all who continue to join in with our campaigning efforts, in the fight for funding for brain tumours.

FIND OUT MORE:

www.braintumourresearch.org/campaign-with-us

Ben And erson Angela Lloyd with daught ers Bethany and Chloe & Sus an Castle Smith, Regional PR Manag er

bell amp C n ele Dr H

Church d Wayne Penny an

www.braintumourresearch.org Summer 2017 29

CAMPAIGNING

TAKING A LEAD IN BUILDING CAPACITY FOR BRAIN TUMOUR RESEARCH Brain tumours kill more children and adults under the age of 40 than any other cancer

We are challenging the Government and larger cancer charities to invest more in brain tumour research

Following our successful e-petition, the Petitions Committee’s subsequent inquiry, first report and Westminster Hall debate involving over 70 cross-party MPs, a Government Task and Finish Group was set up to address the need to increase the level and impact of brain tumour research.

With the backing of over 120,000 people (who signed the petition demanding more funding for research into brain tumours) we are playing a lead role within the Group to ensure the Petitions Committee’s recommendations are followed through.

30 Summer 2017 www.braintumourresearch.org

The Government should:

According to the Petitions Committee, “successive governments have failed brain tumour patients and their families for decades” yet in the 12 months since the Petitions Committee report, national spend on brain tumour research may have gone backwards. Latest reported figures from the National Cancer Research Institute revealed that the total national spend on cancer research allocated to research into brain tumours decreased to just 1.37% in 2015.

• Take a greater lead by playing a role in identifying gaps in funding, by setting priorities for research and by supporting the development of the research workforce required to give those suffering with a brain tumour some hope for the future • Give a clear statement of whether it thinks funding levels are adequate and, if not, what it will do to ensure that funding for brain tumour research increases

The burden of research investment into brain tumours has fallen heavily on the third sector.

In 2015, charities funded 86% of the national research into brain tumours, while the 14% of Government spend on brain tumour research represented just 0.52% of its total spend on cancer research in 2015.

• Use its powerful influence on funding levels to send a clear message that brain tumour research is a major priority for the UK • Ensure that there is adequate support for young scientists who wish to pursue a career in brain tumour research, so that they can stay and progress in their areas of specialism • Not leave the prioritisation of research funding only to the voluntary sector, it should consider the burden of disease from brain tumours and take a more active role in setting priorities for brain tumour research funding

In a shocking announcement late last year, Cancer Research UK estimated that deaths from brain cancer will remain static over the next 20 years with just one in five surviving the disease for five years following diagnosis, yet they predict that overall cancer death rates within the UK will fall by 15% by 2035.

The chronic lack of funding for research into brain tumours and absence of leadership from successive governments has left a gap in the research workforce within the UK. Better outcomes are the result of painstaking long-term research both in the lab and in the clinic. We need a significant boost to dedicated research investment in order to increase the number of neuro-oncologists and help us get closer to a cure for brain tumours.

The Government must not leave charities to tackle this devastating disease alone; responsibility for deciding on priorities for medical research and for identifying diseases with unmet need should not be left to the voluntary sector.

The Task and Finish Group will deliver its findings and recommendations in a new report to Health Ministers, due to be published in September 2017.

• Ensure greater oversight of research funding to ensure that it is able to identify, and if appropriate, take steps to address any gaps in funding NCRI Partners - 2015

Brain tumours have been neglected for too long; we cannot allow this situation to continue. While we applaud the wonderful advances for many other diseases, through the fantastic research breakthroughs of recent years, it is now time for brain tumour patients and their families to see results. We need to bring hope to the 60,000 people living with this disease in the UK.

We will bring you more news of this and all our latest campaigning updates as they happen on our social media feeds and our website.

Total Annualised Research Spend

% Contribution

Brain Tumour Total

% Actual

% of Cancer Spend

All Government

188,350,707

37.81%

974,564

14.24%

0.52%

All NCRI charities

309,744,980

62.19%

5,869,675

85.76%

1.90%

£498,095,687

100.00%

£6,844,239

100.00%

1.37%

Total Partners

If you would like to join in our lobbying activity and engage your MP, please fill in our online form by visiting: www.braintumourresearch.org/register-your-lobbying-interest or email us at: campaigning@braintumourresearch.org www.braintumourresearch.org Summer 2017 31

MEMBER CHARITY UPDATES The mission of Astro Brain Tumour Fund is to fund research into low-grade gliomas. They are also a vital source of information, support and hope for the low-grade glioma community. The past year has been very busy for the charity, with their supporters raising great amounts at a range of exciting fundraising events!

Supporters in Norfolk have enjoyed a number of foodie-themed events including a ploughman’s lunch in Holme-next-the-Sea; a pie and mash night in Sedgeford and a traditional Christmas lunch with entertainment from Hunstanton Community Choir. These raised in excess of £1,400.

There have also been some exciting physical challenges! In September 2016, Costas Eleftheriades successfully completed a Mount Kilimanjaro Challenge in memory of his son Tom, raising nearly £1,700. Then in December 2016, Daryl Evans took part in a white-collar boxing match in support of Karan Waller and her family and raised a wonderful £970.

Angela Coker, Ladies Captain of Hunstanton Golf Club, chose Astro Brain Tumour Fund to support during her Captain’s year. Angela and the ladies’ section organised many fundraising events including a Lady Captain’s Drive in, Christmas raffles, a coffee morning, fashion show and Lady Captain’s Charity Day. These fantastic fundraisers have raised almost £5,000!

Astro Brain Tumour Fund’s popular annual fundraising event, the Norfolk Family Walk, raised an amazing £9,568 in 2016. It will return to the Holkham Hall Estate on Sunday 15th October 2017 – all are welcome! Please visit their website to find out more.

for their generous support and reiterated the charity’s commitment to improve the quality of life of people affected by neurological problems.

mentioned that he regretted not accessing support services available. His humorous speech carried the important message that there needs to be more awareness of neurological problems and of the support that is available to people affected by them.

The evening’s special guest was TV chef Si King from the hit show Hairy Bikers. Si spoke to a full room of over 100 guests about his brain “shemozzle”. In 2014, after spending four days feeling an itch on the head and a bad headache he was taken to hospital where he then discovered he had suffered a subarachnoid haemorrhage – “two words that I never thought would be in my existence”, as he said.

On Tuesday 7th February 2017, the Brain & Spine Foundation celebrated 25 years of supporting people with neurological problems at its annual supporters’ reception held at the Royal College Subarachnoid haemorrhage affects 6-9 people of Surgeons. per 100,000 per year, accounting for only 6% of The evening was kicked off with a special welcome to the charity’s London Marathon Team.

The charity’s CEO, Alice Doyle thanked the guests

www.astrofund.org.uk

“I am enormously privileged and humbled to be here”, King said, “and it’s nice to meet some people who have been as terrified as I have.”

all strokes but its mortality rate is 50% with 1015% of patients dying before they reach hospital.

The Brain & Spine Foundation runs a neuroscience nurse-staffed free Helpline for people affected by any neurological problems and provides accessible and reliable publications accredited by the NHS Information Standard on over 25 different topics.

When talking about his recovery, Si King

www.brainandspine.org.uk

32 Summer 2017 www.braintumourresearch.org

In February 2017, we were honoured to help officially launch In Sue’s Name. Our newest Member Charity was established in memory of Susan Blasotta, who tragically lost her battle with a brain tumour at the age of 42. Their mission is to raise £1 million in 10 years to fund vital brain tumour research. At the time of launch they had already raised enough to sponsor six days of research at our Centre of Excellence within Queen Mary University of London (QMUL).

Up to

40%

of all cancers spread to the brain Every tile on the

Wall of Hope represents £2,740 and funds a day of brain tumour research

The inspirational launch event was held Evening Standard that day – a testament at the Blizard Institute within QMUL to the incredible ambition of the charity. and was attended by family, friends, supporters and scientists from within the David Taylor, Susan’s father spoke university itself. It was a poignant yet about the importance of their celebratory occasion with all attendees mission: “Galvanised by the fact that able to take part in a lab tour and many treatments for brain tumour patients placing tiles on the Wall of Hope, marking remain so limited, we hope that this days of research they had already funded will lead to more effective treatments through fundraising activity. and ultimately a cure.”

The event received much press attention and was even featured in the

www.insuesname.org

www.braintumourresearch.org Summer 2017 33

TRIBUTE FUND

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

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

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

Your Tribute can also be added to our ‘Forever in our Hearts’ Tribute Garden. This is a place for individuals, families and friends to share and celebrate the life of their loved one, and to find others who have been affected by a tragic loss due to a brain tumour.

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

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

34 Summer 2017 www.braintumourresearch.org

“A gentleman through and through. It was an honour and a privilege to meet and work with you.

The angels are truly blessed to have your presence.”

From Michelle in memory of Michael L

“My heart goes out to you all. An incredibly brave, strong & loving family whose suffering has touched so many.

Instead of sending Christmas cards this year, I send my donation to this worthy charity.

Much love to u all xxx” From Carly in memory of Steve H

“Michael I miss you so much. Your positivity and your willingness to get stuck in and help those in need.

You are a huge loss but will always remain an inspiration to me.”

From Stuart in memory of Michael P

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.

Leila

Philip Emmerton

Selina Margaret Jones

Caroline Richardson

Marcus Aderaye

Debra Espin

Trevor Morgan Jones

Mark Roberts

Patricia Elizabeth Allison

Nick Force

Christine Lee

Diana Rose

Julie Anne Appleford

Harry Fox

Jonathan Leggett

Paul Christopher Russell

Justine Askham

Natalie Freeman

Rosemary Lewis

Josephine Samsome

Brenda Baigrie

Judith Garside

Remo Lusardi

Christine Sanders

J Baillie

Russell Goddard

Rae Macleod

Duncan Scott

Jann Pierre Billingham

Lynne Grant

Christopher Mahony

Velma Sharp

Philip Blackmore

Russ Green

Barry Mangan

Judith Bogie

Alan Griffiths

Alan May

Ronald Henry Alexander Sherwood

John Bond

Louis George Guerin

Irene May

Doris Shorter

Brian Brooks

Wilfred (Wilfie) Hanna

Rev. Peter Moss

Joyce Simmons

Claire Brunskill

David Hardwick

Thomas Murray

Clive Singleton

John Stanley Castle

Edna Harris

Paul Nelson

Mark Andrew Swann

Ernest Frederick Clapham Wendy Harris

Joyce Newington

Pip Taylor

Grace Clarke

Noel Harrison

Kevin O’Brien

Ryan Taylor

Teresa Clarke

Tony Harrle

Simon Oldacres

Paul Thorpe

Andrew Connell

Sally Anne Harvey

Rosemary Orr

Heather Ward

Pauline Cottrell

Nicholas Hastings

Gary Pawson

Ivan Willcocks

Sandra Crook

Stephen Henderson

Linda Petch

Angela Willis

Daniel John D’arcy

Thomas Hill

Gary David Phillips

Aaron Michael Wood

Andrew Alexander Dine

Brian Hoadley

Angela Phillipson

Terry Wooster

John Christopher Drinkall Lee Hopkinson

Irene Pitchford

Jill Wright

Hamish Neve Dunn

Thomas William Ivey

David Evan Powell

Callum Elliott

Jillian Johnson

Robert Rennicks Loved ones here include those lost to a brain tumour for whom we received funeral donations between 1st December 2016 – 31st March 2017 www.braintumourresearch.org Summer 2017 35

Together we will find a cure Our Centre of Excellence Partners

DIVISION OF NEUROPATHOLOGY AND DEPARTMENT OF NEURODEGENERATIVE DISEASE

Our Member Charities

Our Fundraising Groups

Leah’s Fairy Fund

The Lorn’s Legacy

MARK “BOMBER” LANCASTER TRUST

THE

song for sue

FOUNDATION IN PARTNERSHIP WITH BRAIN TUMOUR RESEARCH

We love hearing from you!

Whether you’d like to set up a regular donation, discuss fundraising ideas, are interested in becoming a Fundraising Group or simply want some information... we are only a call, email, tweet or Facebook message away!

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

#FundingTheFight

Registered charity number 1153487 (England and Wales) SC046840 (Scotland). Company limited by guarantee number 08570737.