Believe Autumn 2020

Page 1

Issue 017 – Autumn 2020

The news magazine for brain tumour activists

New petition to increase national research funding


Wear A Hat Day goes virtual




Unstoppable fundraisers help save vital research

Read inspirational stories inside Tel: 01908 867200 |

Covid-19 impact could last a generation

Contents 4 Let’s Keep Research Working An update from our Chief Executive 6 Research Updates The impact of Covid-19 on research New papers published by our Centres of Excellence 10 Campaigning Our new e-petition and the first virtual APPG meeting


Remember Brain Tumour Research in your Will and your gift will provide the hope of a cure to thousands. 01908 867200

Registered charity number 1153487 (England and Wales) SC046840 (Scotland) Please tell us where you saw this advert when responding

12 Member Charity Updates Brain & Spine Foundation, Brainwaves NI and James Clifford Campling Trust 14 Fighting Force Heroes Over £40,000 raised in memory of beloved daughter 2.6 Challenges help save vital research


22 Wear A Hat Day and Wear A Hat Day with Flowers 24 Celebrity Supporters Meet the celebrities who support Brain Tumour Research 26 Conquer It Together Run the 2021 London Marathon or take on a virtual challenge

32 Gifts of Hope Help make a difference in memory of a loved one 34 Forever in Our Hearts

28 Online Giving

18 Amazing Achievers Supporters take on impressive fundraising challenges 20 Fundraising Groups One Pound Warriors, Boogie at the Biscuit and new Regional Groups

29 Lottery 30 Christmas Appeal and Christmas Cards

Cover story 6 Research

in Peril: Covid-19 impact could last a generation


New petition to increase national research funding

22 Wear

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

A Hat Day goes virtual


Unstoppable fundraisers help save vital research

Edited by: Alexa Davies, Susan Castle-Smith, Crispin Zeeman and Sue Farrington Smith at Brain Tumour Research, Suite 37, Shenley Pavilions, Chalkdell Drive, Shenley Wood, Milton Keynes MK5 6LB Printed by: BCQ, 1 Osier Way, Swan Business Park, Buckingham, Buckinghamshire MK18 1TB Designed by: Clearthinking Creative, 51 Church Street, Hungerford, West Berkshire RG17 0JH Brain Tumour Research makes all reasonable efforts to ensure that the information in this magazine is correct at the time of printing. Autumn 2020



LET’S KEEP RESEARCH WORKING What a year we’ve had! In my January’s Believe magazine foreword, we were looking forward to a successful Wear A Hat Day, our biggest London Marathon and delivering our planned income target of £4 million. As our Research Centres reached their fourth and fifth anniversaries of our sustainable funding model, results were coming to fruition and as you will read in this magazine, exciting developments have been published. More pieces of the jigsaw have been solved and we are getting closer to the cure.

In January, the National Cancer Research Institute (NCRI) published the national spend data figures. For the first time since records began the spend on brain tumours, represented 2% of the national cancer research spend. Since Brain Tumour Research was launched in April 2009, we have been demanding parity with other cancers such as breast and leukaemia, this is a step forward but at £15 million this is still not the £35 million a year we campaign for. Indeed, since becoming an NCRI partner in 2017 our own spend has been included. With your support we contributed £1.5 million to the £15 million national spend on brain tumour research. 4


However, as a result of the pandemic our ability to fundraise through mass participation events and gatherings has been severely impacted. In June we finished our financial year a million pounds below plan. We were able to offset this with £500 thousand savings, but inevitably this means we have £500 thousand less to spend on research. We are not alone. Research charities throughout the UK have been decimated, even CRUK are saying that they will have to reduce their spend on cancer research by £150 million.

Autumn 2020

why we need your help During the summer, many of you stepped up to the plate, donating and engaging in virtual fundraising events like the 2.6 Challenge and Wear A Hat Day with Flowers. You helped us raise nearly £600 thousand in our last quarter despite unprecedented times. But we need to raise much more at least £350 thousand a month to keep our research going and to keep campaigning for the national spend on brain tumour research to increase to £35 million a year.

What’s more, our Research Centres have been able to leverage the money we have granted to successfully apply for Government and larger cancer charity funding. To date, the £9 million that we have invested in brain tumour research has meant our Centres have been able to attract a further £8 million from organisations such as the Government’s Medical Research Council (MRC) and National Institute for Health Research (NIHR), as well as Cancer Research UK (CRUK) and Great Ormond Street Hospital. Affirmation that our Research Centres are delivering quality research. You should be proud of the part you have played through your donations and fundraising efforts. We couldn’t do it without you.

So where does this all leave funding for brain tumour research? WE STILL NEED TO FIND A CURE FOR BRAIN TUMOURS. The nation still needs to spend at least £35 million a year on research into brain tumours if we are to find a cure in the next 20 years. This is

Please sign up to our weekly e-news if you haven’t already and keep up to date with how you can help

Please donate or raise as much as you can. Love, thoughts and thanks for everything you do. Stay safe.

Challenging UK Governments and larger cancer charities to invest more in brain tumour research

Please sign our petition

(see page 10).

Sue Farrington Smith MBE Chief Executive Autumn 2020



COVID-19: DEVASTING IMPACTS THAT COULD LAST A GENERATION Yet to date, the Government has not offered any specific support to research charities beyond the furlough scheme.

The Association of Medical Research Charities (AMRC) brings together over 150 charities, including Brain Tumour Research. Together, they account for 51% of publicly funded medical research in the UK. In 2019 this investment amounted to £1.9 billion. AMRC member charities have consistently invested more than £1 billion in research in each of the past 10 years. The AMRC has said: “There can be no doubt that medical research charities play a vital and unique role in our nation’s health and world-class life sciences sector. Unfortunately, their role is at significant risk. Medical research charities stepped up to support the country as the pandemic hit. Now it’s time for Government to step up and help reboot charity-funded research that saves and improves countless lives.” Professor Silvia Marino, the Principal Investigator at our Queen Mary University of London Brain Tumour Research Centre of Excellence added: “Much-needed new therapeutic approaches for brain tumour patients are on the horizon and proofs of principle have been established. We are on the road, via clinical trials, to taking learnings from the scientist’s bench to benefits at the patient’s bedside. Stopping research funding now would not only halt this progress, it would wipe out significant investments of many years. It would be nothing short of a tragedy. Furthermore, the loss of charitable funding would have huge impact on any ability to rebuild post Covid-19. This funding has enabled us to train and nurture the brightest minds in this uniquely complex area. Should there be a break in funding they would be forced to move elsewhere. A break in funding for brain tumour research now would have a devastating impact for years and years to come.” 6

Autumn 2020

Cancer Research UK has announced it could be forced to cut £150 million a year from its research funding, and with research charities throughout the UK expecting to cut their research spend this year by 41%, the projected shortfall in UK medical research investment could be £310 million.

Vital funds are needed to sustain continuous research into brain tumours. If you would like to donate to support our work to find a cure, please visit

As a charity that is determined to ensure the maximum amount of money is invested in sustainable brain tumour research, we regularly commit to research in the year we raise the money from our supporters. We get no funding from the Government; we rely on our supporters to fund our vital research and campaigning work, and as a consequence of the measures implemented in the wake of Covid-19, we faced a 70% loss of income. Lockdown represented an immediate £1 million drop in income, leaving us fearful of dire consequences for research to help improve patient outcomes and, ultimately, find a cure. Sue Farrington Smith MBE, our Chief Executive, said: “The stark reality is that charity-funded research into brain tumours could stop and the vital progress we have made will be lost. This pandemic demonstrates to us all the importance of science, but the need for scientific research into brain tumours was there before coronavirus – it will be there following coronavirus.”

To find out more about the ground-breaking research that Brain Tumour Research funds, visit Professor Silvia Marino Autumn 2020





Influencing UK Governments and larger cancer charities to invest more in brain tumour research

Building a network of experts in sustainable research

During lockdown, our Centre-based brain tumour researchers have been working from home, popping into their labs only for the most important maintenance of work in progress. This has given them time for writing up results, finalising papers and submitting them for publication, and there have been notable pieces of research reported on in the summer of 2020. In June, a paper from our Queen Mary University of London Centre of Excellence was published in a high-impact scientific publication. It involves microglia, a type of cell found throughout the brain and spinal cord which act as one of the main forms of active immune defence in the central nervous system.

Lead author Professor Silvia Marino described this research as “really exciting” and with this new understanding the team will further examine the mechanisms involved, looking at how to target the pathway that the GBM cells interfere with, in pre-clinical models, which if successful would pave the way for future clinical trials.

Glioblastoma multiforme (GBM) initiating cells have been found to trigger a reaction in the microglia that hinders effective T-cell infiltration, proliferation and immune reactivity, thereby contributing to tumour immune evasion and promoting tumour growth. Essentially, GBMs are turning the microglia around them in the tumour microenvironment, bad!

Autumn 2020

Meanwhile, Professor Oliver Hanemann’s team at our specialist Research Centre at the University of Plymouth remains at the forefront of European research into low-grade brain tumours, including meningioma. The team has recently published a paper describing cellular activity and pathways that are upregulated (the process of increasing the response to a stimulus) in Merlin-deficient tumours and which consequently contribute to tumour growth. Merlin is a tumour suppressor protein that is frequently mutated in meningioma. The team used tissue and cells derived from meningioma tumours to investigate the expression of the protein DCAF, part of an enzyme called E3 ubiquitin ligase, which regulates protein breakdown and found they were produced in abnormally large amounts.

Glioblastoma under microscope with dyes. Image credit: Professor Silvia Marino Queen Mary University of London Brain Tumour Research Centre of Excellence 8

University of Plymouth Brain Tumour Research team

They then used primary cells to assess the therapeutic potential of MLN3651, a neddylation inhibitor – this affects activity of the E3 ubiquitin ligase – alongside a further inhibitor, and found that this affected tumour activity to a greater extent than either treatment used in isolation. This paper presents an attractive novel strategy in the treatment of Merlindeficient meningioma.

Jake Symington (above) joins our team at Imperial College London

Prior to the lockdown, Cancer Research UK (CRUK) had set up funding opportunities for clinicians to pause their medical studies and undertake a period of research, and we are very pleased to announce that Jake Symington is to benefit from this scheme. Jake is now working with Dr Nel Syed at our Imperial Research Centre to examine the effect of Arginine Deprivation on Cell Metabolism and Tumour Microenvironment in Glioblastoma. Dr Syed said: “Without the seed funding from Brain Tumour Research and its member charity Brain Tumour Research Campaign, the opportunity to bring Jake into the team just wouldn’t have happened because the team would not exist.” This arginine depletion research studies the nutrients used in brain tumour metabolism and has identified that arginine (an amino acid, one of the building blocks of protein) is used differently by brain cancer cells, and cells in the tumour microenvironment, compared to healthy brain cells. By manipulating the relevant metabolic pathways, arginine levels could be used to influence tumour growth and a paper has recently been submitted on the team’s results so far.

To receive all of our latest research updates, subscribe to our weekly e-news: Autumn 2020





If you would like to campaign with Brain Tumour Research, please register using our online form: campaign-with-us

Lockdown gave us the opportunity to support the first virtual All-Party Parliamentary Group (APPG) on Brain Tumours. Chaired by Derek Thomas MP, the speakers were Sue Farrington Smith MBE, our Chief Executive, as well as representatives from the Association of Medical Research Charities (AMRC) and the National Institute for Health Research (NIHR), with topics being the current spend of the £40 million of Government money promised in 2018, plus the research funding jeopardy facing medical research charities in general, and Brain Tumour Research in particular.

In August, we launched our petition calling for the national investment into brain tumour research to increase to £35 million a year. Brain tumours remain the biggest cancer killer of children and adults under the age of 40 and more funding for research is urgently needed – it must not continue to be left behind. The nation needs to invest at least £35 million a year if we are to find a cure in the next 20 years. You can join us by signing our petition to increase the national investment in brain tumour research and also add your story to our web forum to help us build our case: Please sign our brain-tumour-research-petition petition 10 Autumn 2020

Attending the APPG in July was Kathy Oliver from the International Brain Tumour Alliance (IBTA). We are very supportive of IBTA and have joined more than 70 organisations around the world in endorsing their new Brain Tumour Patients’ Charter of Rights. The Charter sets out the rights to which all brain tumour patients and caregivers should be entitled, wherever they live. The Charter is the result of a truly global collaborative process to help people who are diagnosed with this devastating disease, and those who care for them and treat them. Aspects of the Charter of particular relevance to the UK will form part of our future campaigning agenda and we are delighted to have invited Kathy to address the autumn meeting of the APPG.

It was disclosed that since 2018 there had been a total of 54 applications to the £40 million fund. Just seven of those had been successful, equating to a brain tumour specific research spend commitment of £6 million. The meeting heard concerns about the process by which researchers applied for grants, the need for brain tumour experts to judge brain tumour applications, and how vital it is to encourage unsuccessful first-time applicants to reapply and encourage motivation to ensure scientists remained engaged in the field. The meeting ended with actions to look into this and also to investigate the role of the Medical Research Council (MRC) in funding the basic discovery research we fund and what opportunities this might present going forwards. Challenging UK Governments and larger cancer charities to invest more in brain tumour research

We share regular campaigning updates on our blog: media/our-blog Autumn 2020




Our Member Charities are JOIN US and become helping us build a gamea Member changing network of worldCharity class Research Centres of SIGN UP TODAY Excellence in the UK. Our collective voice carries greater weight raising vital awareness and funds GET INVOLVED, for research, as well as help us providing information fund the fight. and support for patients Together we will and their families. find a cure

In July, our Member Charities came together for our first virtual get together. The meeting offered us the opportunity to discuss and compare the challenges we are facing as a result of Covid-19. These included the impact the virus has had on community-led fundraising, the consequential effects of lower income on research, the increased demand for helplines and support services, and the impacts of the coronavirus on patients’ treatments and wellbeing. Despite these challenges, our Member Charities remain strongly committed to funding research and to supporting their beneficiaries, and we were heartened to hear about some of the positive outcomes from these unusual times, including signs of increased collaboration between charities, and more opportunities for researchers to write up papers and analyse results. We look forward to the return of our Member Charity workshops and face-to-face discussions when social distancing restrictions are eased. Until then, we will host virtual meetings to allow our collaboration to continue as we navigate our way through these difficult times together.

Professor Kevin Prise from The Patrick G Johnston Centre for Cancer Research with Colin McMillan, Brainwaves NI Chairperson.

Brainwaves NI

Brainwaves NI has had a research funding relationship with the Patrick G Johnston Centre for Cancer Research (part of Queen’s University Belfast) for five years – a relationship the charity regards as a fundamental part of its mission in finding a cure for brain cancer. Over these five years, the funding has totalled nearly £500,000. Brainwaves NI is pleased to announce that its funding will continue from October 2020 to September 2021, at a level of £58,000 for the year. A review of funding beyond September will take place early in 2021. In these difficult times when donations and fundraising have been severely curtailed, Brainwaves NI is also heartened by one of the charity’s patients who has been able to raise more than £40,000 in various ways. She is an inspiration to all at the charity.

Sylvia Watt Brainwaves NI Vice Chairperson alongside Dr Caitriona McInerney from The Patrick G Johnston Centre for Cancer Research

James Clifford Campling Trust

Brain & Spine Foundation The Brain & Spine Foundation was delighted to welcome a new member to its Helpline team. Jo brings with her more than 20 years of nursing experience. During her career, she has worked within a specialist Neurological Rehabilitation unit, as well as on acute neuromedical and neurosurgical wards. Before joining the Helpline team, Jo was working as a Care Manager and Clinical Training Manager for another charity. Jo’s confidence, care and enthusiasm are already helping to make a difference. She says: “I am passionate about sharing information and look forward to supporting people who make contact.” The Brain & Spine Foundation Helpline offers information and support for people affected by neurological problems. Call them on 0808 808 1000. 12 Autumn 2020

Charlotte Stowe, a friend of James’ since primary school, is supporting the James Clifford Campling Trust with beautiful, travel-inspired art which she has created using recycled materials. Charlotte is donating all money raised from the sales of her African Collection to the charity. Set up by family and friends of James to continue his legacy, the James Clifford Campling Trust has three aims: it offers funding of up to £2,000 to people over the age of 18 with a life-changing condition to help them reach their life goals; it is setting up a retreat to support people with life-limiting illnesses and their families, and is funding research into glioblastoma multiforme (GBM) brain tumours.

We welcome new Member Charities. If you are interested in joining us, please visit or email for more information Autumn 2020 13



FIGHTING FORCE HEROES The cast of Waiting in the Wings

Having studied Stage Management at Queen Margaret University and spent years working as part of the stage crew for numerous Edinburgh amateur theatre companies, Jenny was a much-loved presence in the theatre community. In October 2014, her parents, Alan and Rene, celebrated her memory and love of theatre by organising a two-night charity concert in Edinburgh with an impressive selection of Jenny’s favourite musical numbers, lots of different performers and an enormous raffle. The event was a sell-out success and raised more than £15,000 for Brain Tumour Research.

Jenny Hogg was a passionate musical theatre fan and fast car enthusiast who lived life to the full. In 2011, after multiple visits to the doctor as a result of pain above her eyes, she and her family were shocked to learn that she had been diagnosed with a brain tumour. Jenny’s characteristic positivity shone through as she underwent surgery and chemotherapy and, for a time, she was stable, but in 2013 she received the devastating news that her tumour had grown and spread to other parts of her brain. With no further treatment available, Jenny remained committed to making the most of the time she had left with her family and friends. The family enjoyed Christmas together, but it was clear that Jenny’s condition was worsening. Sadly, Jenny passed away in March 2014, aged 33.

The family didn’t stop there – they continued to fundraise for Brain Tumour Research over the following years with lots of different challenges, including a skydive. Their commitment to our mission has been commemorated with tiles placed on the Wall of Hope at the Brain Tumour Research Centre of Excellence at Queen Mary University of London. To date, more than £40,000 has been raised and donated to Brain Tumour Research and Marie Curie, which supported the family through Jenny’s illness.


14 Autumn 2020

Alan says:

“No parent should lose their child, but it happens all too often. Nothing can bring Jenny back, but to be part of helping to raise funds so that ultimately no one else loses someone they love is what it’s all about.” We applaud Alan and Rene for their unwavering support. We hope their outstanding fundraising efforts inspire others to help us fund the fight to find a cure for brain tumours.

Jenny with her parents, Alan and Rene, and brother, David

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

And the show continues to go on. From the 14-16th October 2021, a production of the laugh-out-loud musical Avenue Q will be staged to mark what would have been Jenny’s 40th birthday with proceeds donated to Brain Tumour Research.

Carole Gibson, Lisa Fleming and Janet Walker did a skydive to raise money for Brain Tumour Research

Feeling inspired? If you’d like to set up your own fundraising event, head to for more ideas and guidance on how to get started Autumn 2020



SUPPORTERS PULL TOGETHER The postponement of the 2020 London Marathon posed a huge risk to charities. Born as a nation-wide effort to save the UK’s charities, The 2.6 Challenge took place on 26th April, the original planned date for the marathon, and saw participants inventing their own challenges based around the numbers 2.6 or 26. This new virtual event became the biggest collective fundraising effort in the world, involving nearly 4,000 charities.

Otto a nd ready to his family run

FIGHTING FORCE HEROES Four-year-old Otto was diagnosed with a grade 4 medulloblastoma in 2019 and was determined to complete his own marathon challenge despite undergoing chemotherapy in hospital at the time. Alongside his sister, Tilly, Otto completed 26 laps of his garden, whilst his parents, Amy and Thomas, ran 2.6km.


Not only that, but they raised more than £3,000 as a result of their efforts

As always, our amazing supporters pulled out all the stops and completed lots of impressive challenges to raise more than £50,000 for Brain Tumour Research! One novel idea came from 27-year-old Mema Nackasha, who set herself the mammoth task of completing 26 different challenges in 26 days. Mema was inspired by her father, Wajdi, who was first diagnosed with a brain tumour when Mema was a teenager and underwent surgery and follow-up treatment. Last year, the family were shocked to learn that the tumour had returned and was now classified as an aggressive glioblastoma multiforme (GBM). Mema’s whacky challenges saw her raise a staggering £10,762 with more money still coming in, and included everything from fitting 26 olives in her mouth to Mema’s Comedy Club with 26 jokes from some big-name comedians. Mema with father Wajdi, mother and brother


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

When Leah Martin was just two years old, she was diagnosed with a high-grade medulloblastoma and underwent several operations as well as chemotherapy and radiotherapy which left her with long-term side effects. Now eight, Leah managed to raise more than £800 as she took part and completed a gruelling five days of 26 squats. Leah’s mum, Joanne, who set up the Leah’s Fairy Fund Fundraising Group, says:

“Leah found completing 26 squats each day for five days as part of the charity’s 2.6 Challenge fundraising drive very demanding. She has mobility and balance issues which made it very hard for her, but she was so determined. We are so grateful to everyone who has donated.” 16 Autumn 2020

mpleted Leah Martin co lenge a gruelling chal

And it wasn’t just supporters who took part. The teams at our Research Centres of Excellence used the event to stand in solidarity with fundraisers across the country. Researchers completed a host of different challenges, including cycling 26 miles in under two hours and six minutes, 26 yoga poses and an exhausting 26 reps of 26 exercises in 26 minutes. Together they raise a combined £1,800. We are so grateful for their commitment to research and to fundraising.

Thank you to everyone who took part in The 2.6 Challenge. Your efforts have helped to keep vital research working. If you’d like to take part in a virtual event to support our vital research, please visit Autumn 2020




Emma ’s has be fiancé Edd e mile a n running a day

Our incredible supporters have been proving once again that there is no limit to the ways you can fundraise. Bearsted Cricket Club came together in May to bike, trek or run a combined distance of 1,749km in support of Richard Luxton, a playing member who was diagnosed with a glioblastoma multiforme (GBM) brain tumour in 2018. Richard has undergone surgery twice, radiotherapy and chemotherapy, and his family completed 50km on the day. Setting out with a target of £1,749, the Club managed an incredible total distance of 3,000km and raised in excess of £9,400. Gary Bell lost his son, Rob, to a brain tumour in 2013. This year, Gary will cycle the length of the UK from Land’s End to John O’Groats, covering more than 900 miles in Rob’s memory. Gary says: “I’m a keen cyclist and am looking forward to the challenge. I’m very grateful to my son Chris, nephew Tommy, and Tommy’s friend Owen who will be joining me on the ride, and we hope to raise £5,000.” The quartet look well on their way to smashing their target. When the Strabane Lifford Half Marathon was cancelled, Enya Quigley and her sister, Megan, decided to run 5km every day in May in memory of their friend Michaela Bradley who passed away

from a brain tumour in 2010, aged 18. Setting out with a target of £500, the sisters raised an impressive £4,145 and totted up a total distance of 155km. In Cheshire, Rick Dickens is running 5k every day in 2020. Having already racked up an impressive mileage, he also organised a virtual 5k in July which saw more than 350 people donating £10 to take part in the run. Rick has raised more than £10,000 and with a few more months left in the calendar, we wish him all the best. Emma Bond was diagnosed with a brain tumour in June 2019, and her fiancé Edd has been running a mile a day in 2020 to fundraise for Brain Tumour Research, The Walton Centre and Clatterbridge Cancer Charity. So far, the couple have raised more than £1,000 to help support our vital research. After losing his father to a brain tumour in 2011, Nick Hampshire wanted to raise awareness and money to find a cure for this devastating disease. In June, he completed an eight-hour live, virtual workout on his Facebook page and raised £1,856 to beat his target of £1,000. And it’s not just fitness that fundraises. Northern Irish singing actress, Katie Patton, was diagnosed with a pituitary brain tumour as a child and decided to raise money by holding a virtual music concert. The show premiered on the Brain Tumour Research Facebook page on Sunday 2nd August, and viewers donned their favourite hat to tune in

18 Autumn 2020

and sing along from the comfort of their own sofa. Katie’s event raised more than £1,800. Whether it’s cycling, running, squatting or singing, we are amazed by our supporters’ achievements. The funds they raise will help us in our mission to build a network of experts in sustainable research to find a cure.

Liz h his wife uxton wit Sam L rd a h ic d R n Charlie a and sons

Gary Bell w

ill be compl

eting LEJO

Rick Dicke ns running in costume w ith friends

Ready to take on your own challenge? Visit believe-fundraising to let us know.

Thank you to all those who crossed the finish line. You raised around an amazing £320,000!

Katie P


Enya a n comple d Megan af te ting la st 5k r Emma

Nick Hampshire completed a live virtual workout



Left to right: Megan, friend Caoimhe, Enya and Michaela

Do your own thing – Fundraise for us! Autumn 2020 19



NEW FUNDRAISING GROUPS JOIN OUR TEAM We are delighted to welcome four new Groups to our Fundraising family. We are grateful for their commitment to championing our cause, and we look forward to working together.



to continue to fund long-term, life-saving research

We have passionate supporters all around the country and this exciting initiative celebrates our values of community and collaboration, offering people affected by brain tumours the opportunity to meet like-minded supporters and achieve something positive together.

With the assistance of her mum Sarah, Lillie set up the One Pound Warriors Facebook group. She encouraged people to join and pay £1 in order to raise the £300,000 which was needed to fund a clinical trial in the US for her best friend’s treatment.

Brain Tumour Research Community Development Manager Joe Woollcott, will coordinate the two Groups. He says: “Everyone is welcome and together we can raise money to fund research to bring about better outcomes for patients and, one day, a cure.

The girls captured the nation’s hearts and achieved the seemingly impossible, reaching their fundraising target in just a matter of weeks.

A year after Kieran’s death, Beth organised a fun-filled event for more than 270 guests at the Biscuit Factory in Newcastle Upon Tyne. Boogie at the Biscuit saw partygoers donning their black ties and gowns for an evening of music from a top ABBA tribute band, an impressive auction, and a raffle with a bumper 54 prizes up for grabs.

The inaugural event was a resounding success, raising more than £24,000 in Kieran’s memory Beth has since held a bingo night and raised a further £2,098 for Brain Tumour Research.

Boogie at the Biscuit now joins us as an official Fundraising Group and will continue to raise money and awareness with the next Biscuit Factory event planned to take place in November.

We hope that this is the start of an exciting new fundraising future.

One Pound Warriors has now become an official Brain Tumour Research Fundraising Group, and has launched a £1 million appeal to fund research into finding a cure for brain tumours.

20 Autumn 2020

Boogie at the Biscuit was set up by Beth Wright in memory of her husband, RAF Wing Commander Kieran O’Sullivan. When she first met Kieran two years after his brain tumour diagnosis, Beth was hopeful that there would be advancements in treatment, but this was not the case and Kieran passed away in November 2018, aged 44.

“The idea is we can meet and get to know each other, share fundraising ideas and support each other with organising events.”

Sadly, it was too late for Lillie’s friend who passed away in February before she was able to access treatment, just five months after her diagnosis.

“I am so proud of what One Pound Warriors has achieved already and the amazing community spirit among its members and I know we can do even more together.”

REGIONAL FUNDRAISING GROUPS In 2020 we launched our first Brain Tumour Research Regional Fundraising Groups in Glasgow and the North East of England.

When her close friend was diagnosed with a brain tumour in September 2019, 14-year-old Southend schoolgirl Lillie Cotgrove wanted to help.

Lillie says: “I want to help all patients diagnosed with brain tumours. It’s vital we find better treatments for these patients so that no one has to seek hugely expensive treatment abroad with no guarantee that it will be life-saving.

BOOGIE AT THE BISCUIT We love these new smart logos: you can scan them with your smart phone to make a donation!

If you have been inspired by Lillie’s story, please join the monthly appeal and set up a regular donation here appeals/one-pound-warriors

er Command RAF Wing O’Sullivan n ra Kie

If you’d like to set up a Fundraising Group to help maximise the money we raise for vital research and campaigning, please visit Autumn 2020




Wear A Hat Day was expected to raise £360,000 for our vital work, in line with 2019, but with mass participation events being cancelled as a result of the lockdown we feared the worst. However, this wasn’t going to stop many of our amazing supporters from donning their best headgear to make the event a digital success, raising £130,000, an incredible achievement in the circumstances. We worked with some hugely supportive families in creating our marketing collateral for the campaign this year. With poignant photos taken by Venture Studios, the families shared their brain tumour stories to highlight the devastating and indiscriminate nature of the disease, raising awareness and inspiring others to take part in Wear A Hat Day. The Charavda family was part of our marketing campaign

The easing of lockdown restrictions in June coincided with our annual Wear A Flower Week. Our first Wear A Hat Day with Flowers bloomed as a way for people to celebrate. Launched by BBC TV’s Instant Gardener, Danny Clarke, who lost his sister Margot to a brain tumour in 2012, this was a great opportunity to have fun and fundraise. Danny is Martyn Harvey one of our Celebrity Supporters featured on pages 24-25.

ke y Clar Dann

Colleagues at Vistra took part online

Photo by Venture Studios

Many businesses take part in Wear A Hat Day and 2020 was no different. Global corporate services and fund administration provider, Vistra, was inspired by two colleagues diagnosed with a brain tumour. More than 70 employees participated online and encouraged people to donate. Regional Managing Director at Vistra, Derek Kemp said: “Not only was it a fantastic event to raise awareness of brain tumours, it uplifted employee spirit and spread much-needed positivity.”


22 Autumn 2020

After collapsing on the Tube on his way home from work, Sam Suriakumar was diagnosed with a brain tumour in February. Sam, who himself raised more than £9,000, thanked the Northern Line staff who saved his life and his story inspired them to take part in Wear A Hat Day with Flowers to raise money to help find a cure.

Sidmouth had grand plans for a Wear A Hat Week to support Charlotte Reid and Charlie Gwillim, both of whom are living with brain tumours. When events were cancelled, residents took to social media to post hatty selfies and donate.

The town showed the power of community, helping them to raise more than £1,000

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

Sam Suri ak and his fa umar m part in W ily took e Day with ar A Hat Flowers

mber lubs me Lions C Fran Stary

Following the release of his entertaining new children’s book, The Boy with the Saucepan Hat, author Martyn Harvey kindly agreed to judge our story-writing competition, which was open to children aged five to 13 years taking part in Wear A Hat Day with Flowers. Martyn read the winning story in a special video in August. The author is continuing his support for Brain Tumour Research by donating a percentage of the sales of his book to the charity. Find out more and get your copy here:

Lions Clubs International British Isles joined us in 2019 as a charity partner and jumped at the chance to take part. They held a number of virtual events and raised more than £600 towards their overall target. We look forward to their continued support over the coming years.

Our hattastic antics will continue with added festive sparkle as the first Wear A Christmas Hat Day takes place on Friday 18th December. Get ready to dust off your Christmas party hats and start planning some cool-yule fundraising!

THANK YOU to everyone who took part and helped us to minimise the shortfall caused by the lockdown

To stay up-to-date with all things Wear A Hat Day, please visit Autumn 2020



Angela Barnes

Rachel Riley

Danny Clarke

Jo Whiley

Sarah Beeny

Josh Widdicombe

Sheila Hancock CBE

Our celebrity supporters are an integral part of the Brain Tumour Research community. Using their credibility and stature, they are able to raise valuable awareness, open doors to new opportunities and connections, and help with our fundraising and campaigning activities. The majority of the celebrities who support the charity have been affected by brain tumours, either personally or through a loved one receiving a diagnosis.

Caprice Bourret

Supermodel, actress, entrepreneur and mother, Caprice Bourret became involved with Brain Tumour Research following her shock meningioma diagnosis, and subsequent successful surgical intervention, in Spring 2017. Caprice was the figurehead for our Wear A Hat Day campaign in 2018, and she continues to undertake numerous media and ambassadorial appearances in support of our work. Caprice is hugely motivated to make a difference for those affected by brain tumours and has made a considerable personal investment into funding vital research. As a Patron of our charity, she plays a key role in raising awareness of this devastating disease and campaigning for increased national investment into finding a cure. “As Patron, I am really pleased and proud to have been able to support Brain Tumour Research because the research it funds is so important. I have met many patients and their families and I raise the profile of the charity when I can in the media.”

24 Autumn 2020

Actor and author Sheila Hancock CBE became involved with the charity after her grandson Jack was diagnosed with a brain tumour when he was four years old. We are very proud that Sheila has recently been recognised in Woman & Home magazine’s Amazing Women Awards 2020 for her long-time support of Brain Tumour Research and as Patron of founding member charity Ali’s Dream. This recognition is richly deserved and we are grateful for her support. Sheila says: “I’ve seen this group of individuals work so hard to raise funds for research and equipment, growing more and more confident and determined. I’m delighted and privileged to be a tiny part of it.” A familiar face on our television screens, property expert and presenter Sarah Beeny, was 10 when her mother died of a brain tumour, only to lose her stepmother to the same disease 30 years later. Sarah has campaigned with the charity and supported our Wear A Hat Day campaign over the years, helping to raise awareness for increased funding for research into finding a cure. As well as launching our first Wear A Hat Day with Flowers in June, Danny Clarke has been the face of our Wear A Flower Week campaign since 2018, asking people to join him in wearing a

flower and making a donation. Danny supports the charity to prevent families from facing the devastation that he experienced after losing his sister Margot to a glioblastoma multiforme brain tumour aged 52. This year, we were delighted to welcome lots of new celebrities who were supporting Wear A Hat Day for the first time. Presenter and mathematician Rachel Riley, broadcaster and DJ Jo Whiley, comedian and presenter Josh Widdicombe, and stand-up comedian Angela Barnes were just some of the public figures who donned our iconic Lock & Co top hat and helped to spread the word about our biggest fundraising event of the year, encouraging people to take part and fundraise. We are so grateful to all the celebrities who support Brain Tumour Research. These gamechanging collaborations are helping us in our mission of finding a cure for brain tumours. To find out more about our celebrity supporters, visit our website about/our-patrons-celebs Autumn 2020 25


Carrie H Donna olbrook an d Wrigh t


The cancellation of the 2020 London Marathon saw many people’s running dreams thwarted, but as we have already seen with The 2.6 Challenge, people are not resting on their laurels until the next London Marathon in October 2021. Our supporters are embracing all sorts of virtual challenges right now. Read on to see how you can participate in the London Marathon 2021, whilst taking part in virtual challenges throughout the year to continue your fundraising for Brain Tumour Research. r

The London Marathon is one of the world’s most iconic races, and places in this high-profile event remain highly sought after. With its reputation as a race experience that will stay with you forever, we know that lots of our supporters will be hoping to take on this challenge of a lifetime in 2021. If you want to join our Fighting Force team, here is how you can: Enter the ballot for the 2021 race. Subscribe to our weekly e-news bulletin subscribe and we’ll let you know when the ballot is announced. When you enter, choose us as one of the charities you’d like to hear from and we’ll back you all the way. Apply for one of our charity places by filling in our online form: fundraise/take-on-a-challenge/ london-marathon-2021-application. We have a limited number of 2021 London Marathon places available, so register your interest early Choose to run for us and we’ll give you all the support you need with your preparation, training and fundraising to make your 2021 London Marathon experience as rewarding and memorable as possible. We’ll also give you exclusive insider tips for getting the best out of your race day, as well as sending you a free fundraising pack!

To find out more, contact our National Fundraising Events Manager, Carol Robertson: Don’t want to wait until the 2021 London Marathon to take on your challenge? If you are ready to lace up your trainers now, why not kickstart or give your training a boost with one of our virtual challenges? Choose your distance from 5k to the full 26.2 miles and when you complete your challenge, we’ll send you a virtual medal and certificate to share on social media, with real ones to follow as soon as possible. Now more than ever, we need your amazing fundraising support to help keep our vital research working. A virtual event is a great way to raise some money and inspire your friends and family whilst we wait for normal event schedules to resume. When Hayley Lawrence’s marathon plans were put on hold, she wanted to find another way to fundraise for Brain Tumour Research. Hayley was inspired to run in memory of her daughter’s close friend, Amelia, who was diagnosed with a ganglioglioma brain tumour when she was four years old. Tragically, Amelia passed away nine years later in October 2018, aged 13.

26 Autumn 2020

Hayley, whose husband Phil was also diagnosed with a ganglioglioma brain tumour 13 years ago, adapted her marathon challenge to run the distance over five days and completed her challenge on 26th April, the day she was due to be crossing the London Marathon finish line. We applaud her efforts and perseverance at this crucial time when we face a shortfall of income as a result of continued uncertainty around events.

Melanie n Wilkinso

te Megan af Enya and last 5k g in et pl m co

Watson r Gardine

In this new world of social distancing, virtual challenges can help you to stay fit and keep training, all whilst raising money to help find a cure for brain tumours. If you feel inspired and want to sign up for your own challenge, please visit: take-on-a-virtual-challenge lunt and

B Phoebe

Charlotte Price Just some of our Fighting Force Heroes who have run the London Marathon for Brain Tumour Research

her Dad

Take on a virtual challe nge like Hayley and raise fun ds for us Hayley Lawrence Autumn 2020 27



WE NEED YOUR HELP TO FIND A CURE FOR BRAIN TUMOURS It’s quick and The pandemic has hit charities hard and Brain Tumour Research is no exception. Your donations are now more important than ever before.

easy to donate to us online

PLAY FOR 2A2 CURE AND WIN UP TO £25,000 IN OUR NEW LOTTERY! With a jackpot prize of £25,000 up for grabs, the Brain Tumour Research Lottery is a fantastic way to help us achieve our vision of finding a cure for brain tumours whilst offering you the chance to win a great prize.



Did you know that you can generate donations whilst shopping online without spending a penny extra?

You can play for just £1 a week and, after prizes and admin costs, 50p comes directly to Brain Tumour Research to support our vital work. That means that the more players we have, the more winners we can celebrate and the more research we can fund as a charity.


Sign up for free on and select Brain Tumour Research as your chosen charity. When you do your shopping via easyfundraising, retailers will make a small donation to the charity.

What’s more, our Lottery offers you one of the best chances of winning. We have partnered with Unity Lotteries which has the best odds of any platform of its kind because it is a number match game; the odds are fixed, meaning that every number has an equal chance of winning.

You can also sign up to Amazon Smile ( and Amazon will donate 0.5% of every purchase you make (excluding VAT, shipping fees and returns).


You can set up a regular donation via debit or credit card or PayPal on our website:

If you’d prefer, you can also use the online form to make a one-off donation.


A Facebook fundraiser is a simple way to support Brain Tumour Research and it’s easy to create one in minutes. What’s more, every penny you raise helps make a lasting difference to the brain tumour community. To learn how to set up your own, visit our website:


By completing our online Gift Aid form, you allow us to claim an extra 25% on donations that you make at no extra cost to you, providing you have paid enough tax to cover the value of gift aid on your contributions. Complete the short form online:

For every £1 you play, you will receive a unique six-digit number. Draws take place every Friday and if your digits are in the same positions as the digits in the winning number sequence, you win a prize. A player who matches all six digits will win the top prize of £25,000! There are also prizes of £1,000, £25 and five entries into the next draw for players who match five, four, and three digits respectively. As a weekly lottery player, you will be helping us fund sustainable research and get closer to a cure.



We have a range of merchandise available on our online eBay shop. To see our full range and make your purchases, visit

47 Don’t forget to follow our social media pages to hear first-hand updates on the exciting work you fund, share our events, and stay up-to-date with all the ways you can help to support our vital work. Visit our website to find out more about how your money helps: 28 Autmn 2020


To take part in the Brain Tumour Research Lottery, head to where you’ll also find helpful FAQs and full Terms and Conditions Autumn 2020







Your baubles will By donating to our Christmas Appeal, you can also decorate our Christmas share a personal message on a special ‘bauble Hope Trees at each of our of hope’. Your message could be a memory of three Research Centres, with your messages being powerful a loved one no longer with us, recognition of the bravery of someone diagnosed with a brain tumour, reminders of why the work we’re funding at our Centres is so vital. or a heartfelt thanks to our scientists for their tireless ongoing research to find a cure for this devastating disease. THERE ARE THREE WAYS YOU CAN


As we continue to live in uncertain and unsettling times of lockdown and social distancing, one thing we know remains certain: the need for brain tumour research. We are the only national charity in the UK dedicated to raising funds for continuous and sustainable research into brain tumours. Covid-19 has put our work in jeopardy; the loss of funds for research could undo all the advancements we’ve made over the last decade. We are continuing the fight to preserve our research; to not do so is not an option – so many people’s lives in future will depend on the discoveries that our funding can help bring about.


CARDS This year’s Christmas will probably be like no other. Christmas cards will be an important way to reconnect with family, friends and colleagues this year. christmas-appeal 30 Autumn 2020 christmas-cards. Cards come in packs of 10 and cost either £4 or £4.50 per pack.

2. Donate via our postal mailing which we’ll send you in November – make sure you’re on our postal mailing list to receive your own appeal letter and bauble of hope by completing this special form on our website

3. Set up an annual donation through our exclusive Regular Christmas Gift appeal page here

Choose your favourites from our varied and attractive range, boosted with 10 new designs this year, and embrace your loved ones with a positive festive message whilst helping fund the fight against brain tumours. To see our full range of cards, visit

Help us keep the research going. Please make a donation to our Christmas Appeal

1. Donate today on our unique Christmas Appeal web page christmas-appeal – we’ll write your bauble of hope for you.

Cards from


per pack

Could you sell Christmas cards on our behalf? This is a great way to fundraise for us. We can supply boxes of mixed designs on sale or return for you to sell to friends and family, or at your local Christmas fair, sports club, school or workplace. For more information, please call us on 01908 867200 or email Autumn 2020



HELP MAKE A DIFFERENCEd IN MEMORY OF A LOVED ONE Losing someone to a brain tumour is an incredibly difficult and traumatic event for anyone to go through. We are always humbled when people contact us asking how they can support the charity after losing a loved one. Many families find comfort in supporting Brain Tumour Research, knowing that their donations will help to find a cure for the dreadful disease that took their loved one away. For some, asking family and friends to remember them through donations to the charity is a way for them to know that they are helping to prevent families in the future from going through similar devastation.

Brain Tumour Research is reliant on kind donations from our supporters to keep our research going. These vital funds enable researchers at our Centres of Excellence to make the ground-breaking steps like those on pages 8-9 of Believe which are bringing us closer to finding a cure.

One way to celebrate a loved one’s memory is to set up a tribute fund. These funds give families and friends the opportunity to leave messages, share memories and add special photos, videos or music. You can also easily see how much has been raised, with the peace of mind that every pound will make a difference towards finding a cure for brain tumours.

Funeral Tribute page (which can also act as a funeral notice), which you can then share online with family and friends. This fund gives the opportunity to make a donation along with leaving a personal message of condolence or even lighting a virtual candle, which, in the current situation, many people are finding the best way to receive donations from well-wishers.

When a loved one is lost there are many decisions to make, including how to respect their wishes. Many people have already decided to ask for donations at their funeral but sometimes this is also something decided by the family themselves. We can help you with some of these arrangements by setting up a

If you prefer, we can also help you by providing collection boxes and Gift Aid donation envelopes.

For further information about how to make a donation in memory of a loved one, receive some Gift Aid donation envelopes or advice about setting up one of our online tribute funds, please get in touch with Michael, our Head of Giving, using either of these contact methods: or call 07592 502707.

32 Autumn 2020

If you would like, we can also share your loved one’s story on the In Our Hearts page on our website stories/in-our-hearts as another way to honour their memory.




in our hearts

We thought of you with love today, but that is nothing new. We thought about you yesterday, and days before that too. You are 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. Sue Abbott

David Burrell

Moira Cunny

Richard Grady

Carol Alison Horton

Abi Leahy

Roy Nelsey

Michael Porter

Andrew Simpson

Maurice Roy Ward

Alison Jayne Alcock

Reginald Walter George Burton

Ray Curtis

Ron Graham

Darryl Foy Howard

Barry Lewis

Blaise Nelson

Ronald Powell

Ms Eddie Sinclair

Edith Warren

Richard Curtis

Stephen Greenwood

Marion Nancy Hudson

Keith Little

Amanda Newland

Amy Quin

Bob Slassor

Tony Warren

Andrew John Cushion

Chris Griffen

Maisie Elisa Humphries

Susy Long

James Nixon

Jean Relf

Keith Smith

Jenna Watkins

Robert Dabinett

Steven Griffiths

Ellen (Ellie) Jackson

Andrew Brian Lovatt

Martijn Offenberg

Peter Reynolds

Allison Sones

Martin William Wellsbury

Linda Dean

Nicholas Hale

Philip James

Ian Lyndsay

Kev O’Mahoney

Mark Howard Richards

Doreen Sparrey

Caroline Wheatcroft

Stuart Dolphin

Ronald Norman Hancox

Ruth James

Elizabeth Maclaren

Marjory Palfreyman

Margaret Baldwick Rickard

Bob Spencer

Deborah Wheeler

Michael Downer

Carol Hanley

Kaj Jamieson

Ronald Charles Marsh

Alex Parker

Campbell Robinson

Ron Spiegel

Anthony John Wilkinson

Susan Kathleen Duffin

Susan Harbour

Leon Jefferson

Stella Martyn

Peter Parrott

James Robinson

Jackie Stevens

Gordon George Williams

Vivian Eddy

Vera Harris

Richard Francis John

Simon Paul McCoy

Jenna Marie Parsons

Raymond William Roe

Gordana (Goga) Svilar

Renee Willmott

David John Eldred

Ian David Haughton

Ivor Eifion Jones

Stuart McCullagh

Rob Payne

Ray Rosenberg

Peter Sweeney

Margaret Wilmington

Sian Ellis

Glenys Haywood

Kenneth Jones

Mavis Elizabeth McDonald

Rev Trevor John Pearce

Josephine Ann Rudd

Eileen Taylor

Joan Wilson

Lesley-May Smith Fage

Derek Hellyn

Margaret Elsie Jones

Jim McGregor

Neil Peart

Janette Russell

Mark Thompson

Julie Wilson

Sue Fields

John Henry

Peter Kelsey

Gavin McMahon

Brenda Peck

Charles Sargent

Howard John Thornton

Richard Fossett

Terry Hicks

Jim Kennefick

William Patrick Miller

Henry John Phelps

Maureen Saunders

Robin Andrew Todhunter

Kathleen Violet Elizabeth Wilson

Derek John Foster

Victor Hobbs

Christopher (Chris) King

Kathryn Owe nee Milligan

Patricia F Pierce

Gregory Martin Saville

Arthur George Vernoum

Eric William Bassett French

Angela Holden

Ian King

Eileen Margaret Mills

Roger Douglas Pinchin

Daniel Schultz

Holly Vidler

Matthew Gardner

Richard Holmes

Jennifer Ann Lambert

Bob Morris

Gavin Plank

Martino Sclavi

Eva Vooght

Terence George

Arthur Honeywill

Neville John Lawler

Kev Munroe

Nicholas Pope

Angela Sedgwick

James Walker

John Aldred Christopher Arbuthnot Katy Bailey Donald Baillie Leslie Ball Mary Bartlett Joan Berry Garramond Billings Carolyn Ann Bisset Carol Black Dora Bookless Richard Humphrey Boughton

Mrs Lesley Bushell Lydia Carfrae Dominic Michael Carney Jacqueline Anne Castle Frank Pierce Catt Ian Cochran Eileen Margaret Cockayne Wendy Cockcroft Joan Kathleen Elsie Coe Damian Colman Stan Conroy Lesley Cook

Beverley Boulton

Karen Cooper

Mike Bradshaw

Alice Couser

David Mark Bryan

William Anthony Critchley

Hazel Anne Bubb

Nigel Crowther

Robert Wilson Norman Woodcock

Loved ones here include those lost to a brain tumour for whom we received funeral donations between November 2019 – June 2020 34 Autumn 2020 Autumn 2020 35


Our Member Charities

Our Fundraising Groups




Leah’s Fairy Fund


r re

s e ar c


fu n dr ai








o r t o f b r ain


The Lorn’s Legacy


Tel: 01908 867200 | Brain Tumour Research, Suite 37, Shenley Pavilions, Chalkdell Drive, Shenley Wood, Milton Keynes MK5 6LB

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

Issuu converts static files into: digital portfolios, online yearbooks, online catalogs, digital photo albums and more. Sign up and create your flipbook.