Believe Summer 2023

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www.braintumourresearch.org Tel: 01908 867200 | info@braintumourresearch.org Issue 025 – Summer 2023 Deadly childhood tumours under the microscope at new Research Centre
PM
It’s time to
up for our flagship Walk of Hope Read inspirational stories inside COVER STORY CROWNING GLORY: TOP MILLINERS CREATE BESPOKE HATS FOR FUNDRAISING AUCTION The news magazine for brain tumour activists
+ Momentous March sees MPs debate funding and campaigner meeting
&
step

WE URGENTLY NEED YOUR SIGNATURE TO HELP SAVE LIVES

Cover story
Crowning Glory: Top milliners
COVER HIGHLIGHTS
childhood tumours
at new
Momentous March sees MPs
and
meeting PM
It’s time to step up for our flagship Walk of Hope Contents www.braintumourresearch.org Summer 2023 3
Brain Tumour Research, Suite 37,
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 Brain Tumour Research makes all reasonable efforts to ensure that the information in this magazine is correct at the time of printing. 4 Foreword An update from our Chief Executive 6 Research Updates New Centre focused on deadly childhood tumours Families welcome “desperately needed” Research Centre Initiatives enabling research First steps towards UK GBM clinical trial 12 Campaigning MPs demand brain tumours made a “critical priority” Momentous brain tumour debate at Westminster Inside Number 10 18 Walk of Hope Step up for Walk of Hope 20 Fundraising Challenges Get involved and help find a cure 22 Fighting Force Heroes Supporters run for research 24 Amazing Achievers Fundraisers doing it their way 26 Fundraising Coronation collection is Crowning Glory 28 Wear A Hat Day Hats off to fantastic fundraisers
Partnerships Partnering to make a difference
Support Two decades of Brain Tumour
33 Fundraising Groups A warm welcome to our new Fundraising
News from our Fundraising Groups 36 Member
Updates News from our Member
26
create bespoke hats for fundraising auction
6 Deadly
under the microscope
Research Centre 12-17
debate funding
campaigner
18
Edited by: Alexa Davies, Liz Fussey, Susan Castle-Smith and Sue Farrington Smith MBE at
Shenley
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32
Support
Groups
Charity
Charities
Please sign our petition calling on the Government to ring-fence £110 million to kick-start increasing national investment in brain tumour research to £35 million a year by 2028 Together we will find a cure www.braintumourresearch.org /petition Registered charity number 1153487 (England and Wales) SC046840 (Scotland)

THE NEXT CHAPTER

It is with much sadness that I will be retiring as Chief Executive on 30th June 2023. This was a difficult decision for me having been diagnosed with low-grade abdominal cancer, followed by extensive surgery in September 2022. I am now much stronger, but will need annual scans and blood tests.

I have always committed 100% of my energies to the success of the Charity and our shared vision of finding a cure for all types of brain tumours but on returning to phased and then full-time work, I realised that I no longer have the energy to lead the Charity in the way that I would like and need to.

In the interest of the Charity and its future growth and for the sake of my family, I am therefore stepping down but am delighted to be able to continue to serve the Charity as a Trustee. I look forward to continuing to work with Ashley Bailey, Deputy Chief Executive and Director of Finance and Operations, who will take on the role of Interim Chief Executive whilst the Trustees recruit my replacement. He is supported by a strong leadership team.

HELP US

to continue to fund life-saving research

One in three know someone affected by a brain tumour

Having worked pro-bono for the Charity and, with the support of Justin, my husband, underwritten start-up costs as we set up and grew the Charity in its first two years this has been more than a job; it is a passion. So in my retirement year and in lieu of gifts I will be participating in several fundraising ventures to raise money for Brain Tumour Research and hopefully raise enough for a tile on the Wall of Hope at our new Centre of Excellence at The Institute of Cancer Research where they are researching to advance treatments for the deadliest of childhood cancers, including diffuse intrinsic pontine glioma (DIPG) –the type of brain tumour that took away my beloved niece Alison Phelan, three weeks before her eighth birthday on 7th June 2001.

I have met so many wonderful people over the years, too many to mention – but you know who you are! I would like to single out one of our Trustees, Nigel Boutwood who founded the Charity with me, alongside fellow Trustees Wendy Fulcher (Chairman) and Sandy Saunders (President). I met Nigel in November 2000, three months after Ali had been diagnosed, he founded the UK’s first researchfocused brain tumour charity, Charlie’s Challenge in 1993, following the diagnosis of his son Charlie with a medulloblastoma when he was just 20 months old.

His stamina and passion for the cause surpasses all others. Charlie is now a successful young man who is getting married next year and this year they are celebrating the 30th anniversary of their Charity – amazing. I look forward to continuing to work alongside Nigel on the Board.

My time in both founding and growing this unique Charity has been thoroughly enjoyable. Although tinged with emotion because of the reason we are here, it has provided the most fulfilling years of my life so far. I am very proud of all we have achieved together, especially through establishing the All-Party Parliamentary Group on Brain Tumours (APPGBT) and shining a light on the historic underfunding of brain tumour research – we are making a difference. I look forward to being able to support the next chapter of the growth of Brain Tumour Research as a Trustee and community activist.

I have been overwhelmed by the many emails, texts and messages I have received since announcing my retirement and will not be a stranger.

Please continue to support the Charity in whatever way you can and engage your clubs, schools and organisations. Our fifth and sixth Centres are in sight if we can keep growing our income by at least another £1 million a year, each year.

Together we will find a cure

If you would like to make a donation to the Charity through my ‘retirement fundraiser’ and leave me a message, I would be delighted. www.justgiving.com/ page/sue-farrington-smith1682453902610

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

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Alison Phelan Nigel and Charlie at Speaker’s House in 2019 Charlie in intensive care in July 1993 Sue kicked off her fundraising with a Lego walk
FOREWORD

NEW CENTRE FOCUSED ON DEADLY CHILDHOOD TUMOURS

Brain Tumour Research has announced £2.5 million funding to help find a cure for the deadliest of all childhood cancers.

The grant is being awarded to The Institute of Cancer Research (ICR), Sutton, Surrey, where a team of scientists led by Professor Chris Jones will form our fourth Brain Tumour Research Centre of Excellence.

The Centre has ambitious plans to identify new treatments for high-grade glioma brain tumours –which include those previously known as brain stem glioma and diffuse intrinsic pontine glioma (DIPG) – occurring in children and young adults. It will act as a crucial bridge connecting worldwide research and analysing findings which will help inform and enable the setting up of much-needed clinical trials.

Dr Karen Noble, our Director of Research, Policy and Innovation, said: “The aim is that this work will lead to trials within the next five years so we can give real hope to families in the future. The current situation means that people, already facing the most distressing circumstances, often have no option but to search for and fund trials abroad with all the expense, upheaval and uncertainty that brings.

“It is crucial that attention is focused on this most deadly of childhood cancers. We are grateful to our loyal supporters whose commitment and hard work has made this milestone possible. But we need the Government to step up and not rely so much on investment from charities.”

The team will lead the way in scientific research into paediatric-type diffuse high-grade glioma (PDHGG) brain tumours such as high-grade diffuse-midline glioma, including DIPG.

PDHGG fact f

•PDHGG are a collection of high-grade glioma tumours which include diffuse intrinsic pontine glioma (DIPG) and other high-grade gliomas (HGG)

•They affect children and young adults with an extremely poor clinical outcome

•For some subtypes less than 5% of patients survive more than two years

•Median survival for the vast majority of patients affected by these tumours is just nine to 18 months

tumours. Improving outcomes for children with these types of tumour is crucial if we are to make progress and bring much-needed hope to so many.”

Prof Jones said: “These tumours are incredibly resistant to current treatments and children are in desperate need of new options.

“Our lab is working day in, day out to unravel the underlying biology of these dreadful tumours, and hopefully uncover new ways to attack them. This invaluable support from Brain Tumour Research will help to fuel new discoveries and pave the way to smarter, kinder treatments for children.”

Your continued support has enabled us to reach this milestone in our mission to establish a network of seven sustainable Centres of Excellence across the UK. Thank you for everything you do.

There is still much more to be done. Please help us continue our vital work to find a cure for all types of brain tumours by donating what you can or setting up a regular donation today: www.braintumourresearch.org/donate-now

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Set up a regular donation TODAY! to continue to fund long-term, life-saving research
HELP US
The ICR team with Professor Chris Jones (centre) The ICR research team Professor Chris jones

FAMILIES WELCOME “DESPERATELY NEEDED” RESEARCH CENTRE

Families have welcomed the announcement of our fourth Brain Tumour Research Centre of Excellence at The Institute of Cancer Research (ICR), Sutton, Surrey. Bringing much-needed hope for the future, the team’s research aims to identify new treatments for high-grade glioma brain tumours – including those previously known as brainstem glioma, diffuse intrinsic pontine glioma (DIPG) and glioblastoma (GBM) – occurring in children and young adults. The median survival for the vast majority of patients diagnosed with these tumours is just nine to 18 months.

Top: Jasmine holding her radiotherapy mask

Centre: Jasmine with parents Anthony and Jakki

Bottom:

It is news Karen Carter says has been “desperately needed for far too long”. Karen’s son Charlie was diagnosed with a GBM in March 2010. He underwent surgery, radiotherapy and chemotherapy, but died just eight months later, at the age of seven.

“We spent hours and hours searching for a cure for our little boy with doors slamming in our faces everywhere we turned. It was exhausting and draining but we were looking for a cure,” Karen said.

“A Centre like this has been desperately needed for far too long and, whilst it’s come too late to save Charlie, our hope is it will prevent other families from having to suffer the same pain our family lives with every day.”

Many families facing these desperate diagnoses turn to crowdfunding to pay for private treatment and trials abroad.

Seven-year-old Jasmine Freeman was diagnosed with an inoperable midline glioma in February 2023. Heartbreakingly, her parents, Anthony Freeman and Jakki Nguyen, have been told Jasmine has just 12 months to live. Anthony said: “Before her diagnosis, Jasmine was a normal child and we knew so little about the disease. To learn that it receives such little Government funding for research is shocking.

“It’s amazing that Brain Tumour Research has launched a Centre to research the disease, including the type Jasmine has. Had this happened years sooner, we may have had the opportunity to watch our little girl grow up.”

When Isabella Ortiz was diagnosed with a DIPG in June 2017, she underwent chemotherapy. After she ran out of treatment options on the NHS, Isabella’s family crowdfunded £120,000 to pay for a private trial. It extended her life, but sadly Isabella died in October 2019, aged five. After their devastating loss, Isabella’s parents donated samples of her brain tissue to the ICR describing it as “her final gift to the world”

Isabella’s mum Assunta said: “We quickly learned what a DIPG diagnosis really meant. It was a death sentence. It wasn’t if she would die, but when.

“This announcement is the news I’ve been waiting for, and I hope it will lead to new drugs, therapies, and treatments for this devastating disease.”

We are grateful to all the families and patients who share their stories to help raise awareness of this devastating disease. If you would like to share your story, contact our dedicated PR team via: media@braintumourresearch.org

RESEARCH UPDATES www.braintumourresearch.org Summer 2023 9
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Charlie Carter-Bates Karen and Charlie Isabella and Assunta Isabella Ortiz

INITIATIVES ENABLING RESEARCH

Brain Tumour Research supports innovative research in the UK, and is committed to growing capacity, building infrastructure and accelerating treatments.

To deliver on these aims, the Charity has partnered on two exciting initiatives.

FIRST STEPS TOWARDS UK GBM CLINICAL TRIAL

GBM and MM cells

Credit: Brain Tumour Research Centre of Excellence at Imperial College, London

In partnership with the Tessa Jowell Brain Cancer Mission, the Brain Tumour Research Novel Therapeutics Accelerator (BTR-NTA) is designed to close the gap between the number of promising research findings and those that progress into successful clinical trials. It provides the infrastructure for researchers to receive bespoke feedback on the development path for the therapeutics they are studying, as well as identifying pitfalls in clinical trial design before they approach potential funders.

Since it was announced in June 2022, the initiative has welcomed Dr Charlotte Aitken as a full-time programme manager and recruited 12 brain tumour, pre-clinical and pharmaceutical experts, as well as a patient representative. It is also building an extended bank of experts who can provide tailored expertise for applications.

Encouragingly, the programme has already received several expressions of interest with applications invited from June 2023. Selected applicants will have their therapeutic reviewed by a panel of experts at the first in-person review meeting in November.

Applicants can register their expression of interest online: www.tessajowellbraincancermission.org/ strategic-programmes/btr-nta

In partnership with our Member Charity brainstrust, Brain Tumour Research also funds the Patient Research Involvement Movement (PRIME), which was set up to bring people with direct experience of living with a brain tumour into contact with the clinical research community where they can help shape studies and secure funding for research and clinical trials.

The programme continues to work towards a new gold standard for patient and public involvement (PPIE) in the clinical brain tumour research landscape. PPIE is essential if clinical trials are to be funded; it offers insight into how best to design a study and improve the quality of the study overall, so that it is meaningful, relevant and more likely to recruit.

Patient advocates have been involved in early-phase clinical trials including one to determine a model for brain tumour patients’ disease; studies on social cognition assessments for brain tumour patients and establishing core outcome sets for brain cancer trials; and a surgery trial for people with brain tumour related epilepsy.

To find out more about PRIME, email adam@braintrust.org.uk

Read more about BTR-NTA and PRIME on our website: www.braintumourresearch.org/ research/enabling-research

Work is underway to take forward exciting findings which could improve outcomes for patients diagnosed with glioblastoma (GBM).

The team at the Brain Tumour Research Centre of Excellence at Imperial College, London, is developing a robust protocol for a ‘windowofopportunity’ clinical trial. This type of trial allows a drug of interest to be given to a patient over a short period of time prior to the instigation of standard of care treatment.

The study would see patients treated with a drug called ADI-PEG20 in combination with radiotherapy prior to surgery, before continuing down the route of standard care.

It aims to build on exciting findings from our Imperial Research Centre where ADI-PEG20 was shown to improve the efficacy of radiotherapy. The drug depletes arginine –an amino acid which is critical for the growth and survival of human cancers. Results from preclinical models suggest that by reducing the supply of arginine, GBM tumours are much more susceptible to radiotherapy.

In the project named WISTERIAN, funded by Brain Tumour Research, Dr Matt Williams and the team are writing the trial protocol and gathering the additional data required to secure external funding for the clinical trial.

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Dr Matt Williams

TUMOURS MADE A “CRITICAL PRIORITY”

A landmark report from the All-Party Parliamentary Group on Brain Tumours (APPGBT) calls for wide-ranging changes in how research into the disease is funded.

Pathway to a Cure – Breaking Down the Barriers was launched on the eve of Brain Tumour Awareness Month at a Westminster reception where George Freeman MP, Minister of State in the Department of Science, Innovation and Technology, highlighted his commitment to the cause as he addressed more than 100 attendees.

The APPGBT – for which Brain Tumour Research provides the secretariat – launched an inquiry in 2021 to investigate the barriers on the pathway to a cure. Guided by Derek Thomas MP, Chair of the APPGBT, the inquiry gathered evidence to determine what the barriers are and what must be done to break them down.

Calling out the current funding system as unfit for purpose, the report claims patients and families continue to be let down despite the promise of millions of pounds of investment which has not materialised. It also raises issues in the treatment of terminally ill children denied access to last resort clinical trials and highlights a so-called “valley of death” in which potential new treatments discovered in the laboratory fail to reach patients.

KEY RECOMMENDATIONS OF THE INQUIRY INCLUDE:

•The Government should recognise brain tumour research as a “critical priority”, ring-fencing £110 million of current and new funding

•The research funding system has been built in silos and needs to be joined up from basic science through to clinical trials, and brain tumour patients should have equity of access to trials of new anti-cancer drugs

•Funding bodies should ring-fence specific funding for research into childhood brain tumours where survival rates for the most aggressive tumours have remained unchanged for decades

Among those in our community who welcomed this milestone were Louise and Matt Fox, whose beloved son George died from a glioblastoma (GBM) in April 2022. He was just 13.

Louise said: “We fought for George as hard as we could. Now, despite our loss, we continue to fight in the hope it will help other families in the future. We are activists in a world we never wanted to be part of because it is what George would have wanted. Despite, and perhaps because of, the horror of never seeing our son grow into a man we will never stop trying to make a difference for future young brain tumour patients.”

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

Derek said: “The sad fact is that brain tumour patients do not have the luxury of time. The Government must act now in order to recognise brain tumour research as a critical priority, appoint a champion, and ringfence sufficient funds to make a difference.”

Inset left: George Freeman tweeted his support of the report

us

CAMPAIGNING MPs
DEMAND BRAIN
Just 1% of the national spend on cancer research has been allocated to this devastating disease www.braintumourresearch.org Summer 2023 13
12 Summer 2023 www.braintumourresearch.org
Derek Thomas MP
George Freeman MP as we
a
Louise and Matt Fox Campaign with us
This report will inform brain tumour campaigning throughout 2023 and beyond. Join
campaign for
cure: www.braintumourresearch.org/ campaign-with-us
report can be read in full on our website: www.braintumourresearch.org/ appgbt-briefing-pathway-2023
Adams with Lord Stuart Polak, APPGBT
officer The
One in three know someone affected by a brain tumour
Our Chief Executive Sue Farrington Smith MBE

Derek Thomas MP delivered a passionate address

MOMENTOUS BRAIN TUMOUR DEBATE AT WESTMINSTER

Brain tumours were in the spotlight during a milestone debate in the House of Commons.

The landmark debate on brain tumour research funding – the first on the subject since the Westminster Hall debate in 2016 –was held in the main chamber of the House during Brain Tumour Awareness Month.

Campaign with us

Among the MPs who contributed to the debate were Hilary Benn MP, who became an active member of the APPGBT after being contacted by his constituent and brain tumour patient Rory Burke, and APPGBT officer, Holly Mumby-Croft MP, also contributed. Read about how Holly’s constituent Nicki Hopkins engaged her in our cause on pages 16-17.

Movingly Siobhain McDonagh MP spoke about her family’s devastating experience with the disease. Siobhain’s sister Margaret has been diagnosed with a glioblastoma (GBM).

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

Concluding the debate, Derek Thomas said he was “encouraged that the discussion does not end here” adding that it must continue “because far too many lives depend on it”.

Derek Thomas MP, Chair of the All-Party Parliamentary Group on Brain Tumours (APPGBT), opened the debate with a powerful statement that brain tumour research should be made “the priority of all cancer research”.

He praised the Realf family for their tireless campaigning in memory of their son Stephen, who died in 2014. Stephen’s sister Maria Lester launched the 2015 petition calling for increased funding for research into brain tumours and the family has campaigned alongside Brain Tumour Research for many years.

Stephen’s dad Peter watched the debate in the public gallery alongside Maria and members of our team. He said: “We have some new momentum now and I’m hopeful we can keep pushing forward to make the Government live up to its responsibilities and fund brain tumour research adequately.”

Main image: Stephen Realf

Inset: Staunch campaigners Peter Realf and Maria Lester

Sarah Owen MP told attendees about “true inspiration” Amani Liaquat, who was just 23 when she died from a GBM, and Greg Smith MP paid tribute to “one of the most inspirational campaigners and fighters on this cause”, our Chief Executive, Sue Farrington Smith MBE.

In his response, Health Minister Will Quince referenced the APPGBT inquiry report, Pathway to a Cure – Breaking Down the Barriers, stating: “There are detailed recommendations here, with potentially far-reaching consequences, and the MRC, NIHR and I will consider responses and come back to colleagues.”

He added: “I am confident that the Government’s continued commitment to funding will help us make progress towards effective treatment.”

The week after the debate Derek, a committed champion for the brain tumour community, raised our cause directly with the Prime Minister during Prime Minister’s Questions. He asked Rishi Sunak to make brain tumours a critical priority because “a uniquely complex disease needs a unique response” adding “the brain tumour community has not seen the breakthroughs in treatment and survival rates that many of us believe they should have”.

Thanking Derek for his “thoughtful and powerful question”, the PM said he would “make sure that he (Derek) gets a meeting with a relevant minister, so we can assure that funding gets out to the people who need it, and we can bring relief to them as quickly as we can”.

Momentum is building and we are encouraged by these displays of political will. Join us as we drive forward our campaigning to keep brain tumours at the top of the political agenda: www.braintumourresearch.org/ campaign-with-us

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Hilary Benn MP Greg Smith MP

INSIDE NUMBER 10

Two women dedicated to campaigning after losing their husbands to brain tumours took our cause to the heart of Government with two visits to Number 10 Downing Street.

Hugh Adams, Head of Stakeholder Relations, said: “Nicki takes every opportunity to fly the flag for the brain tumour cause, whether through campaigning or fundraising. We are so grateful that she also enlisted her MP Holly Mumby-Croft into the brain tumour fold as Holly has become a fantastic advocate for change.

Since losing her husband Dave (known as Did), Nicki Hopkins has campaigned tirelessly alongside Brain Tumour Research for greater investment into funding research to find a cure for the disease.

Nicki, who set up a Fundraising Group called Team Hopkins – Winning for Did which has raised more than £48,000, was nominated by her MP, Holly Mumby-Croft, for an award as a Community Champion. She was invited to a Downing Street reception where she met the Prime Minister Rishi Sunak. Nicki said: “To be honest, it felt bittersweet as I really don’t like praise. I know Did would be proud of me, but all I want is change to the ridiculous situation that just 1% of the national spend on cancer research has been allocated to brain tumours and significantly keep Did’s legacy alive.

“In my head I could hear Did laughing as I made my way to Downing Street. In his words, he would be ‘buzzing’!”

Nicki’s campaigning journey began in 2020 after Did was diagnosed with a glioblastoma (GBM). Struggling to come to terms with her husband’s diagnosis, Nicki reached out to her MP to expose the chronic underfunding of brain tumour research, which led Holly to raise the couple’s case during Prime Minister’s Questions.

Holly has since become a member of the All-Party Parliamentary Group on Brain Tumours (APPGBT) and contributed to the Westminster debate held during Brain Tumour Awareness Month.

Main image: Holly, Nicki and Prime Minister Rishi Sunak (credit: 10 Downing Street)

Inset: Nicki at Westminster. Did with his family

“Campaigners like Nicki are vital in supporting the work that we do to influence the Government and larger charities to invest more nationally in research to find a cure. They are helping us make the difference that patients now and those in the future so desperately need and deserve.”

As a member of One Cancer Voice – a coalition of more than 60 cancer charities – Brain Tumour Research attended the hand-in of the One Cancer Voice petition, demanding action to tackle Britain’s cancer crisis.

Our campaigner Uzmah Yunis, who lost her husband Laurent Viteau in August 2021 to a GBM, was one of three charity campaigners to present the 80,000-name petition to Number 10 on Wednesday 22nd March.

As well as Uzmah, the Chair of the APPGBT Derek Thomas MP and APPBGT stalwart Hilary Benn MP represented our brain tumour community at the Number 10 hand-in. As Derek said: “We need the Government to make sure people who have cancer also have hope.”

Read our campaigning blog for all the latest updates: www.braintumourresearch.org/media/our-blog

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CAMPAIGNING
Nicki and Holly outside Number 10 Above: Uzmah and Laurent Left: Uzmah and Derek Thomas MP (right) handing in the petition
CURE
Uzmah (right) outside Number 10
Together we
will
find a cure HELP US campaign for a

STEP UP FOR WALK OF HOPE

The power of walking cannot be underestimated.

Our biggest walk last year saw hundreds of people flock to Wardown Park in Luton to join a Walk of Hope organised by two bereaved mums who have both lost a child to a brain tumour.

Saturday 30th SEPTEMBER

Walk of Hope is a truly inspiring event and brings people together for one important cause: to find a cure for all types of brain tumours. We need your support to help make 2023 our best year yet.

This year, our organised walks will take place across the UK on Saturday 30th September. We’re putting plans in place to make them even bigger than ever and hope to create a festival atmosphere with music, food and entertainment. We need as many of you as possible to join us with your family and friends to help maximise the funds and awareness we raise.

If our walks aren’t convenient for you, there’s also the option to organise your own walk in your community. Don’t worry if Saturday 30th September doesn’t work for you – you can do your walk any day in September that suits you. When you register, we’ll be here every step of the way to make sure you have everything you need for a successful and fun day.

Will you help us make WALK OF HOPE bigger and better than ever?

Help us create a sea of pink across the UK and raise lots of money to fund the fight against the biggest cancer killer of children and adults under the age of 40. Register today via www.walk-of-hope.org and our friendly Fundraising team will be on hand to support you, offer their fundraising expertise and make sure you have the most enjoyable and memorable day.

Yasmin Stannard lost her daughter, Amani, to a glioblastoma (GBM) in February 2022, aged 23. Louise Fox’s son, George, was just 13 when he died from the same type of tumour in April 2022.

The event was a huge success and raised more than £20,500 with around 300 people turning out to support our vital work.

Yasmin said: “The sea of pink Walk of Hope t-shirts with splashes of purple for Amani and red for George was humbling. It meant the world to see so many people standing by our side to remember Amani and George, but also the thousands of other families affected by this dreadful disease.”

As well as asking for donations, stalls offered refreshments, merchandise and facepainting to boost the funds raised. BBC radio presenter Farzana Chaudry, whose father Asmat died of a GBM in 2014, crocheted scores of purple and red hearts especially for the occasion and offered these to walkers in exchange for a donation. A poignant shoe memorial featuring shoes belonging to those who have lost their lives to brain tumours, including many children, was a stark reminder that brain tumours are indiscriminate and can affect anyone at any age.

Louise said: “My husband Matt and I were proud and honoured to help organise the Luton Walk of Hope in honour of our son Gorgeous George, who we miss more than words can say. We were delighted to do this along with Yasmin and Khuram, the parents of Amani, and in memory of our children together.”

We need you to step forward for our Walk of Hope to help us make progress along the pathway to a cure for all types of brain tumours.
Photography credit: ©Tessa Neale
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Louise and Yasmin

FUNDRAISING CHALLENGES

GET INVOLVED AND HELP FIND A CURE

JUNE Event Details

Fri 23 r d Wear A Hat Day with Flowers Kick-start your summer with this fabulous fundraiser

Sat 24 h Wolf Run Leicestershire Join the pack for this tough physical challenge

JULY

Sat 1st Isle of Wight Randonnée Back for a sixth year, saddle up and join our team

Sat 1st Fan Dance Legend It’s man against nature in one of the UK’s toughest endurance events

Fri 7 th Ben Nevis Trek Conquer the highest peak in Britain

AUGUST

All month Cycle 274 Miles Back by popular demand, test your pedal power

All month 10,000 Steps a Day Enjoy the summer sunshine as you step out to find a cure

Sat 19 th Ben Nevis Night Trek Complete an epic trek under the starlit night sky

Sun 20 th Kiltwalk Dundee Don your tartan in the City of Discovery

SEPTEMBER

Sun 3rd Ironman Wales This endurance event is not for the faint-hearted

Sun 3rd Zipslide the Clyde Glide for 1,000ft and enjoy views of Glasgow’s cityscape

Sun 10 th London to Brighton Cycle Ride A 55-mile route finishing at the stunning Brighton seafront

Sun 10 th Great North Run Join 60,000 runners at the world’s biggest half marathon

Sun 16 th Spinnaker Tower Abseil Take on a 100-metre descent down Portsmouth’s iconic landmark

Sun 17 th Kiltwalk Edinburgh Head to Scotland’s capital for an amazing atmosphere

Sat 30 th Walk of Hope Step forward for our great flagship fundraiser

We regularly update our website with exciting new challenges, including skydives, firewalks, abseils and more! Keep an eye on www.braintumourresearch.org/take-on-a-challenge or email fundraising@braintumourresearch.org to find out more

Details

All month Christmas cards and more Get ready for the festive period with our seasonal merchandise

Sun 1 st Cardiff Half Marathon A fast, flat event round Wales’ capital city

Sun 29 th Dublin Marathon Join our #FightingForce team at Europe’s fourth largest marathon

NOVEMBER

All month Brand-new challenge Stay tuned for more information

DECEMBER

All month Christmas merchandise Get ready for the big day with wrapping paper, cards and more

Fri 15 th Wear A Christmas Hat Day Our hattastic fundraiser with added festive sparkle

JANUARY Event

Details

All month Volunteer for us Do something amazing and sign up to volunteer in 2024

FEBRUARY

All month 10,000 Steps a Day Step up for this popular challenge

MARCH

All month Brain Tumour Awareness Month A key time in the brain tumour community’s calendar

Thurs 28 th Wear A Hat Day The main event – wear a hat to help find a cure

APRIL

Sun 7th London Landmarks Half Marathon Take in iconic landmarks as you run England’s capital

Sun 24 th TCS London Marathon Got a ballot place for this iconic event? Run for research

MAY

All month Jog 26.2 Miles Lace your trainers and jog a marathon in a month

...OR DO YOUR OWN THING

20 Summer 2023 www.braintumourresearch.org www.braintumourresearch.org Summer 2023 21 2023 2024 MILES IN AUGUST

FIGHTING FORCE HEROES

SUPPORTERS RUN FOR RESEARCH

Despite missing six weeks of training after he suffered a stroke, Paul Weller crossed the finish line in just over six hours. His determination to complete the challenge was inspired by his stepmum Jenny Weller, who died in May 2022 after being diagnosed with 14 brain tumours in 18 months.

Our Communications Officer, Alexa Copson, also ran the marathon after getting a coveted place in the ballot. She completed the course in 4:41:07 and raised nearly £1,500 for the Charity.

Kate Neale decided to take on the challenge as part of her 60th birthday celebrations. She ran three marathons in six months –an impressive feat!

“I believe in you mate”

On Sunday 23rd April, 50,000 runners and thousands more spectators took to the streets of England’s capital for the 2023 TCS London Marathon.

A team of more than 90 Brain Tumour Research supporters braved the rain and raised an incredible £361,211 at the time of writing – the equivalent cost of almost 132 days of research at a Brain Tumour Research Centre of Excellence. For many, it was a cause close to their heart having been affected by this devastating disease.

HELP US

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

One in three know someone affected by a brain tumour

A devastating loss also inspired Frank Lee to take on his first marathon, which he finished in under five hours. He lost his 15-year-old son, Frank James, to a glioblastoma (GBM) in 2019 and is already eyeing up his next challenge because he wants to do “everything I can to stop this disease”.

Despite vowing she would never run a marathon again, Jennifer Graham ticked this “iconic” event off her bucket list. She lost her brother-in-law, James Flint, to the disease last year.

Nine-year-old Layla Miller was diagnosed with two low-grade pilocytic astrocytomas in February 2021. Inspired by her journey, Layla’s uncle, Mitchell, took on the 26.2-mile route and finished in an impressive 3:50:52, raising more than £8,000 Suki Sandhu lost both his cousin Sarinder ‘Shindi’ Sangha and brother-in-law Aman Sumal to GBM less than two years apart. The London Marathon was the culmination of three fundraisers Suki has done to raise more than £7,000

“I believe in you mate” – those were the words of encouragement fitness guru Joe Wicks had for brain tumour patient Sam Suriakumar during his training. Sam took on the marathon along with his brothers-in-law, Niro Nirmalan and Ahilan Anpananthar, and the trio raised more than £14,000

Three-year-old Roux Owen was diagnosed with a rare brain tumour when he was just four weeks old. His dad, Antony, said he felt “really proud” of his efforts which saw him cross the finish line in 4:22:05 and raise more than £6,000, adding that seeing his wife, Amy, and eldest son, Noah, on the day gave him a “huge boost”.

Thank you to everyone who ran the London Marathon for Brain Tumour Research and raised vital funds and awareness to help find a cure.

We’d love to welcome you to our Fighting Force team! Contact Carol, our National Events Manager, to find out more: arol@braintumourresearch.org

Frank running
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Frank and his son
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Main image: Sam smiling during his run Sam with Joe Wicks during a training run Paul smiling post-race Jennifer Graham Layla and Tommy with Uncle Mitchell Suki near the finish Suki’s support squad Alexa running Kate with her medal Sam with brother-in-law Ahilan Antony doing his marathon Roux and Antony

FUNDRAISERS DOING IT THEIR WAY

From fitness fundraising feats, challenges for special occasions, large-scale events or even turning a hobby into cash to help find a cure – there really are no limits to how you can support Brain Tumour Research.

Teenager Ella Marsh celebrated with a difference when she set out to achieve a series of 16 challenges before her 16th birthday. ‘Challenge 16’ was inspired by her grandad Colin, who died from a brain tumour in 2011.

Ella’s adventures included completing a 16km triathlon, hitting 16 golds in archery, delivering a 16-minute lecture, painting 16 landscapes, piloting a plane for 16 minutes and doing a skydive. Her endeavours raised nearly £3,000 and Ella said her adventure-seeking grandad would be “extremely proud”.

Inset images

Left: After her skydive. Centre: Hitting 16 golds

Right: With Grandad Colin

Keen basketball player Andi Peel was just 30 when he died in January 2023, following a threeyear battle with a glioblastoma (GBM). Inspired by his journey, Andi’s family and friends have raised more than £18,000

His best friend Ross Bland organised the second Andi Peel Charity Basketball Match, which was held at the Leicester Riders’ stadium in April 2023. Ross said: “We held the first charity match last year when Andi was still with us so this one had added poignancy. There was a minute’s applause for Andi at the start of

Andi and Linda before Andi’s diagnosis

funds.

to do as much as I can to raise awareness of brain tumours.”

Days before the match, Andi’s mum Linda braved the heat and took on a firewalk. She said: “I wanted to do a real challenge that would take me out of my comfort zone.

Andi was my inspiration for this and I know it was something he would have loved to do.”

Terry Holden was diagnosed with a meningioma in 2001 and lives with the lifelong effects of his tumour. Tragically, the 73-year-old also lost his daughter Emma to the disease in 2009, aged 33.

During lockdown in October 2020, Terry began writing about his childhood growing up and living on a golf course. Eventually, his notes became a book which he called Links Across the Common which he decided to sell to raise funds for Brain Tumour Research

Below: Terry with his book

Right: Terry with wife

Anne and daughters

Emma and Jenny

Thank you for your support

Centre: Andi supported Brain Tumour Research.

Below: Ross in action.

Some of Abi’s cards

After she was diagnosed with a glioma at the age of 24, Abi Smith embarked on a new venture, setting up a business making and selling greetings cards for people going through cancer treatment. The Cancer Card has so far raised more than £1,000 for Brain Tumour Research

Abi

set up a business

Abi said: “All I ever wanted from this venture was to help brighten at least one person’s day. Plus, raise money for research that in years to come will find a cure for this disease and make a diagnosis like mine much less daunting.”

Fundraise your way and help us bring hope to the one in three people who know someone affected by this devastating disease:

www.braintumourresearch.org/ fundraise-for-us

Abi working on designs

AMAZING ACHIEVERS
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Pilot Ella
It’s not just through challenges and events supporters get involved; many use their creative flair to raise vital

CORONATION COLLECTION IS CROWNING GLORY

A fascination of hats inspired by the royal racing colours has been created by some of the biggest names in UK millinery. Crafted by members of The British Hat Guild, 22 one-off pieces are being auctioned to raise funds for Brain Tumour Research.

Exhibited as Crowning Glory: A Milliner’s Celebration of All the King’s Colours, the hats are all fashioned in combinations of scarlet, purple, black and gold – the colours of the royal racing silks – to celebrate the Coronation. They were hosted by The Jockey Club over the Coronation weekend at the QIPCO Guineas Festival in Newmarket (5th – 7th May) and The Derby at Epsom Downs (2nd – 3rd June).

The hats have been showcased by celebrities, patients and those affected by the disease, including actress Vicki Michelle MBE; TV racing presenter and former jockey Leonna Mayor; presenter and former model Rosie Tapner; and mezzo-soprano Laura Wright.

Also modelling the hats in a photoshoot hosted by Go Epsom at Epsom Downs Racecourse were Melissa Ross and Tina Papworth, who live with the lifelong effects of their brain tumours; Olivia Kold and amateur jockey Jess Llewellyn who both lost their fathers to the disease; Jude Campbell who lost her husband; and Paige Gouge who is undergoing immunotherapy in Germany for an aggressive brain tumour.

The auction is live until Sunday 11th June with proceeds going to Brain Tumour Research. Place your bids via www.braintumourresearch.org/crowning-glory

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Left to Right - Top to Bottom: Vicki Michelle MBE, Tina Papworth, Jude Campbell, Melissa Ross, Jess Llewellyn with mum Cerian, Rosie Tapner, Paige Gouge, Laura Wright, Olivia Kold

HATS OFF TO FANTASTIC FUNDRAISERS

Supporters across the UK helped bring a momentous Brain Tumour Awareness Month to a close by wearing hats and raising funds on Friday 31st March.

Below: Researchers at the ICR

There was also support from the world of politics, including Minister of State for Science, Innovation and Technology, George Freeman MP, and researchers at our new Brain Tumour Research Centre of Excellence at the Institute of Cancer Research (ICR) paired their hats with lab coats to look super for science.

Members of the British Hat Guild attended an event held at Hat Works in Luton, where a raffle featured hats by the Guild’s chairman, Stephen Jones OBE, as prizes. Also in attendance were milliner Misa Harada, whose hat inspired our 2023 signature brooch, and supporters Yasmin Stannard and her husband Khuram Liaquat, who lost their daughter Amani to a GBM.

Employees from the Milton Keynes branch of NatWest welcomed local MP Iain Stewart to their event, which marked the start of a four-monthlong charity partnership with Brain Tumour Research

Claire Cordiner has been getting involved since 2016, raising more than £4,000 to help find a cure. Claire lost her mum Margaret and sister Angie to brain tumours, and her nephew, Angie’s only son, Max, has been diagnosed with a GBM.

Some high-profile names lent their support to Wear A Hat Day this year. Amongst those tipping their cap to our cause was actress Vicki Michelle MBE, best known for playing Yvette Carte-Blanche in ‘Allo ‘Allo, now starring in EastEnders.

Vicki’s EastEnders co-star, Danielle Harold, who played brain tumour patient Lola in the soap, also threw her hat into the ring, along with The Wanted singer Siva Kaneswaran who, after losing bandmate Tom Parker to a glioblastoma (GBM), has vowed to “finish what Tom started”.

for many years. This year, it launched the limitededition Brain Tumour Research Panama with £50 from each hat sold being donated to help find a cure. The shop also displayed hats created by pupils from Blakesley Primary School, Northamptonshire in the shop window.

Wear A Hat Day is always a great excuse to get creative. Pre-schoolers at Tiddlywinks Pre-School in Great Horkesley and pensioners at Abbeyfield Wessex Society House in Romsey put their crafting skills to the test and created their own hats.

Meanwhile staff at Highwoods GP Surgery in Colchester wore hats of all shapes and sizes, took part in a quiz and sold pin badges to help raise extra cash. It was in support of receptionist Sara Thomas, whose dad David died from a GBM.

a brain tumour in 2015. This year, around 390 pupils and 70 members of staff took part. One in three know someone affected by a brain tumour

Wear A Hat Day is a family of three annual events, and our next hattastic fundraiser, Wear A Hat Day with Flowers, takes place on Friday 23rd June. Save the date: Wear A Hat Day is back on Thursday 28th March 2024!

Register now and kick-start your summer with a blooming brilliant event: www.wearahatday.org

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Main image: Siva Kaneswaran George Freeman MP Danielle Harold
Staff at NatWest Bank with Iain Stewart MP
Vicki Michelle MBE Claire Cordiner Tiddlywinks Pre-School Laura Wright, Leonna Mayor and Rosie Tapner modelling the Panama Elaine Williams with her Khuram and Yasmin at Hat Works Abbeyfield House Milliner Misa Harada with Hugh Adams from the Charity Highwoods Surgery Lock & Co. team Year 5 at Ashford Prep School

PARTNERING TO MAKE A DIFFERENCE

Collaboration is at the heart of our values and Brain Tumour Research is proud to partner with organisations of all sizes to help further our vital work to find a cure for all types of brain tumours.

As well as being a wonderful way to inspire and motivate colleagues at all levels, a corporate partnership with Brain Tumour Research offers a great opportunity to boost your brand’s profile and demonstrate your company’s values to your customers, clients or suppliers.

We know how valuable the support of organisations is to our cause. That’s why our partnerships are tailored to maximise the benefits to the Charity and the organisations generously supporting us. There are many ways your workplace can make a real difference and help us get closer to a cure for this devastating disease. Here are just a few:

•Support us as your charity of the year (or years)

•Sponsor our events and help us make them even bigger and better

•Become a sector champion and leverage our cause in your network

•Sponsor a day of research at one or more of our Centres of Excellence

•Offer match-funding to any colleagues fundraising for Brain Tumour Research

•Volunteer for us in a Corporate Social Responsibility (CSR) capacity

•Donate your skills or products to help us keep our costs down

Matt Howarth, our Corporate Development Manager, said: “With one in three people knowing someone affected by this devastating disease, we are truly grateful to all those organisations who work with us to make a real difference for the future. Your support is invaluable in helping us get closer to our vision of a cure for all types of brain tumours.

“Every company is different and we’re proud of our consultative approach to build meaningful partnerships and maximise opportunities to inspire and engage your staff in something that really will make a difference in the future. Whatever the size of your organisation and whatever your job role, we’d love to hear from you.”

Be inspired by some of our current partners:

Award-winning staycations provider Verdant Leisure named Brain Tumour Research as its new charity partner with an ambition to raise £50,000 over 12 months. The company kicked off its support by taking part in Wear A Hat Day and has plans for an exciting year of fundraising.

Corporate support often arises from personal connections to the disease. Insurance company Your Choice Cover hopes to raise £20,000 for Brain Tumour Research inspired by one of its colleagues, James Drew, who is engaged to the daughter of brain tumour patient Mark Poulton.

James said: “I’m delighted that, together with my work colleagues, we will be doing something to help people like Mark.”

West Midlands Trains Ltd has a target to reach £50,000 including by raising funds at train stations and the organisation’s ‘Pennies from Heaven’ scheme, as well as challenges. The two-year partnership is inspired by a colleague’s connection to the disease.

Sports car team RACE LAB is raising awareness by proudly displaying our logo on the bonnet and rear wing plates of its 2023 racing cars. Driver Iain Campbell has a connection to the disease through the Treharne family, who lost their son Ethan to a glioblastoma (GBM) in 2021, aged 17.

To discuss how your workplace could help find a cure contact Matt Howarth via matt.howarth@braintumourresearch.org

PARTNERSHIPS
Fantastic AWARENESS Aiming for an amazing £20,000 £50,000 fundraising target! www.braintumourresearch.org Summer 2023 31 30 Summer 2023 www.braintumourresearch.org
Mark with son-in-law James The RACE LAB car Iain on the podium Verdant Leisure teams taking part in Wear A Hat Day

TWO DECADES OF BRAIN TUMOUR SUPPORT

Brain Tumour Research sends congratulations to Brain Tumour Support as the Charity celebrates its 20th anniversary.

Founded under the name of Hammer Out in 2003, the Charity was established to provide specialist support for people whose lives have been affected by a brain tumour diagnosis.

It was borne out of CEO and Founder Tina Mitchell Skinner’s own experience of losing her husband Paul to a glioblastoma (GBM). Paul was diagnosed in 2001, at the age of 35, and tragically died just 18 months later.

The lack of specialist support available to Tina and Paul at the time sparked a determination that no one else should be left facing a brain tumour diagnosis alone. Starting from the humblest of beginnings –Tina’s home telephone line and small, local meetings over coffee and cake – it was a pioneering approach to support not only patients, but also families, friends and caregivers.

Brain Tumour Support’s reach now extends across the UK, with a team of trained support professionals offering free-to-access services including one-to-one support, support sessions and groups, end-of-life and bereavement support. For more information, go to www.braintumoursupport.co.uk

Our heartfelt congratulations to Tina and the Brain Tumour Support team on the Charity’s 20th year.

Further information about helplines, support groups and other useful links can be found on our website: www.braintumourresearch.org/support

A WARM WELCOME TO OUR NEW FUNDRAISING GROUPS

Band Together

This Fundraising Group was set up by Hannah in memory of her husband Steve Gilmour, lost less than nine months after his diagnosis with a grade 4 gliosarcoma, aged 45. Despite surgery, radiotherapy and chemotherapy, the tumour returned, three times bigger than before.

Steve and his fiancée quickly arranged their marriage, but Steve was already deteriorating and Hannah lost her husband just two weeks later.

Determined to raise funds and awareness as part of Steve’s legacy, Hannah wants to bring an end to suffering through brain tumours or loss.

Hannah’s Kingdom

Hannah King-Page was diagnosed with an aggressive glioblastoma (GBM) and had to retire at the age of 39 on medical grounds from her “forever job” as a physiotherapist. She and her partner Andrew got married while Hannah was undergoing treatment and was, in her own words, “bloated and bald”

Discovering that brain tumour treatment has been stagnant for more than 20 years and can be “a postcode lottery”, Hannah’s Kingdom is committed to raising awareness of the injustices faced by brain tumour patients and to fundraising and campaigning.

For more information and to join our family of Fundraising Groups, visit www.braintumourresearch.org/ become-a-fundraising-group

SUPPORT FUNDRAISING GROUPS
www.braintumourresearch.org Summer 2023 33
Tina Mitchell Skinner Hannah and Steve got together months before his diagnosis
Hannah married Andrew soon after her diagnosis
Drummer Steve in his band the Avi80rs Hannah with her medal after Cardiff Half Marathon Hannah (right) with friend Ranjit before Solihull Half Marathon
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Paul Mitchell

NEWS FROM OUR FUNDRAISING GROUPS

RAISING4RIA

REMEMBERING RAYHAN

A 15-strong team of relatives organised by Rayhan’s mum Nadia Majid and with great support from the local community, incredibly raised more than £10,000 by taking on 10,000 Steps a Day in February to remember her son who died aged four, just four months after being diagnosed with a medulloblastoma.

Nadia said: “Iamreally humbledeverytimeanyonedoes somethinginRayhan’sname.”

Main image. Rayhan Majid before diagnosis

Inset. Top: The Remembering Rayhan 10,000 Steps team

Below: Rayhan after surgery

Swimmers, surfers and healthcare professionals took part in three events for Wear A Hat Day helping to bring Raising4Ria’s fundraising total to more than £107,500, inspired by Ria who died in August 2021, aged 25. Ria’s mum, Carol Melvin, a swimming instructor, held an event at the leisure centre where she teaches. Kaz, Ria’s sister, who lives in Cornwall, invited instructors and surfers to a dip in the sea wearing hats. While staff on the neuroscience wards at Queen’s Hospital, Romford, where Ria underwent a lot of her treatment, continued their support for Wear A Hat Day with a fundraising lunch.

Top: Vicky with her dad Chris Todd

Centre: Vicky looking at her dad’s tiles on the Wall of Hope

Below: Vicky and Graeme at the Wall of Hope

Set up in memory of her dad, Chris Todd, Vicky attended a reception at our Centre of Excellence at Imperial College, London earlier this year along with her partner Graeme to place 12 more tiles on the Wall of Hope. Vicky said: “It was heartening to hear from the scientists at Imperial that breakthroughs are being made in the quest to find a cure.”

The Fundraising Group has raised more than £41,000 to date through events such as bake sales and Wear A Hat Day, as well as lots of raffles.

This Fundraising Group was set up in memory of two brothers, Richard and Michael, lost to brain tumours aged 25 and 54 respectively. Their sister Tracey Porter took on 10,000 Steps a Day in February, raising more than £1,500. She started her steps in Manchester Airport while waiting to pick up her case after a flight back from New York and finished the challenge while on a break in Prague.

Tracey completes her 10,000 Steps on Prague Castle ramparts

For more information or to join our family of Fundraising Groups, visit: www.braintumourresearch.org/ become-a-fundraising-group

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IN CHRIS’ MEMORY
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TEAM JEFFERY RAISING4RIA Kaz (centre) with surfers on Wear A Hat Day Carol (foreground) with colleagues Ria Melvin Staff at Queen’s Hospital on Wear A Hat Day

NEWS FROM OUR MEMBER CHARITIES

JAMES CLIFFORD CAMPLING TRUST

On 10th April 2023, we marked five years since losing James, the inspiration for this Charity, to a glioblastoma (GBM). We have fond memories of James, who was an Aeromedical Evacuation Specialist in the RAF before he had to retire on medical grounds, taking on a whole raft of challenges and events for Brain Tumour Research, including a Yorkshire Three Peaks challenge. His efforts along with a loyal group of friends raised more than £30,000.

Trustee Tim Robinson who is holding a race night later in the year, has co-hosted a successful craft fair for the James Clifford Campling Trust, selling bracelets with inscriptions which he had made.

BRAIN TUMOUR ACTION

Sadly, Brain Tumour Action (BTA), a Founding Member Charity of Brain Tumour Research, is closing down after 30 years supporting patients and their families. A substantial donation to Maggie’s Edinburgh was made from remaining funds to ensure the continuation of the brain tumour support group BTA has run for over 30 years. As well as booklets providing information on living with a brain tumour and informative videos, the Charity organised annual brain tumour family days out, as well as funded research projects. It also campaigned at government level to raise awareness of patient concerns and to highlight the need for greater funding of research into brain tumours.

Our heartfelt thanks go to BTA for all it achieved while supporting the cause.

CHARLIE’S CHALLENGE

Set up 30 years ago in August 1993

(see Sue’s Foreword on pages 4-5), Charlie’s Challenge has raised more than £1 million to help fund research at our Centres of Excellence to identify more effective treatments and a cure for childhood brain tumours. The Charity has also kindly supported Brain Tumour Research to fund Brain UK, the world’s first national virtual brain tissue bank.

Life-long friend of Charlie Boutwood, the inspiration for the charity, Edward Monnington ran the TCS London Marathon this year, his first-ever endurance run, for Charlie’s Challenge, raising £3,500.

CHILDREN’S BRAIN TUMOUR RESEARCH CENTRE

BRAINWAVES NI

We congratulate Brainwaves NI on being nominated as a Charity of the Year by the Student Union at Queen’s University Belfast. Its relationship with the university is to be further strengthened when Brainwaves’ second studentship – a threeyear sponsorship commitment at Queen’s Patrick G Johnston Centre for Cancer Research – is recruited.

The Charity is particularly grateful to Manus McShane who ran 6km every day for a year in memory of his brother-in-law Brendan Devlin, raising an amazing £16,571

Led by Professor Richard Grundy and Dr Tim Ritzmann from the Children’s Brain Tumour Research Centre in Nottingham, a pan-European clinical trial for children and young adults with ependymoma is to be conducted, having received a grant of £1.25 million in funding from Cancer Research UK. Looking at treatment pathways, researchers will examine the benefits of delivering chemotherapy with added valproic acid after surgery and radiotherapy, as well as extra doses of radiotherapy.

MEMBER CHARITY UPDATES www.braintumourresearch.org Summer 2023 37
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To
find out more about potential benefits of collaborating with Brain Tumour Research as a Member Charity, please contact our Trusts and Foundations Manager Anju McLean via anju.mclean@braintumourresearch.org
credit: Alex Wilkinson Photography Prof Richard Grundy Manus McShane presenting his donation Sue Farrington Smith MBE presenting an award in 2011 in recognition of BTA’s contribution to funding research James on AeroMed duties James & Mum Diane at Brize Norton Crown © James & Friends – Yorkshire Three Peaks Charlie in Intensive Care Ed running the London Marathon Ed with MarathonLondonmedal Tim Robinson

forever in our hearts

Steve Abbott

Thomas Gwyn Adams

Roy Anderson

George Trevor Andrew

Helen Archer

Helen Arthur

Janet Astill

Julie Bailey

Richard Bamber

Emma Bartley

Norman Barton

Daphne Bashford

Jenny Bastone

Christopher Beck

Jennifer Bell

Sarah Bell

Samantha Louise Edwards (nee Bennett)

Andrew Betts

Steven George Black

Betty Blades

Robert Arthur Bradford

Ruth Brailsford

Rita Joyce Branch

Howard Broomhall

Janet Brown

Merrick Brown

John Albert Bryant

Colin Burt

Lesley Bushell

Graham Cakebread

Christopher Cameron

Shirley Carnsell

Alison Casey

Brian Chandler

Guy Charvet

John Childs

Malcolm Christie

Kathleen Ann Cobley

Jane Cornish

Malcolm Crawford

Debbie D’Aubney

Barrie Davies

Julie Davies

Kevin Peter Davis

Bob Dobson

Elizabeth (Betty) Doherty

James Dunn

Lorraine Eastwood

Gail Barbara Edwards

Beverly Ellis

Jonny Evans

Val Eves

John Sinclair Fairhurst

Paula Finn

Jack Fisher

Joe Foster

Sandy Foulkes

George Fox

Jamie Freeman

Peter Galgut

Ed Gamble

Celia Gardner

Paul Gardner

Frances (Frankie)

Gibbins (née Turner)

Derek Gilliver

Ethel Girdlestone

Ian Grant

Tony Peter Green

Nick Greenham

Janice Griffiths

Katie Louise Grindley

David John Hall

Patrick John Hannon

Tessa Harding

Edward Hartley

Kevin Herman

Stuart Herman

Stephen John Higgs

Stephen Graham Hobart

Jenny Hobbs

Paul Michael Hoult

James Steven Howarth

Dale Hudson

Lynda Hurstfield

David Irvine

Michelle Jarman

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.

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.

Irene Jones

Joanna Morgan Jones

Martin Jones

Neil Stuart Jordan

Andrew Stuart King

John King

Barbara Kirby

Sue Knowles

Anne Kyte

Neil Lanciano

Andy Lay

Laura Le Beau

Rachel Lynn

Uisdean Dickson

MacBeth

Nancy Grace Maher

Geoffrey Maltby

Johnnie Marland

Tina May

Fergus McDermott

Jimmy Meade

Ralph Middleton

Roger Morgan

Alan George Morrison

Raymond Morton

George Munro

Philip Pang

Fiona Parkes

Ben Parton

Neil Paxton

Francesco Pedinelli

Andi Peel

Rodney Brian Pentland

Ronald Price

Jayne Putland

Raymond Quarrell

Peggy Quinton

Paul Robinson

Raphael Leonard Robinson

Jean Rosamond

Andrew Peter Rose

Alan Routledge

Rosemary Ryder-Boyle

Graham Sedgeworth

Bharat Sharma

Evelyn Mary Shovlin

Paul Shrimpton

Emma Shudell

Norman Simm

Frank Smith

Rod Smith

David Southall

Pam Speed

Susie Steiner

Brian Stringer

Emma Jayne Swindail

Mary Margaret Thomas

Keith Andrew Thorpe

Simon Tierney

Steven Treasure

Ainars Trojanovskis

Angela Vick

Graeme Wallace

Barbara Watkinson

Andy Watts

Barry White

Alison Whitney

Simon Wickenden

Celia Wigginton

Don Williams

Philip Adrian Willis

Brian Wood

Michael Wood

Sally Jayne Woolridge

Kathleen Mary Worsfold

William “Bill” Wright

Darran Wythe

Sylvia Joan Yates

Danny Yehezkel

Helen Young

Gillian Young

Loved ones here include those lost to a brain tumour for whom we received funeral donations between December 2022 to March 2023

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IN MEMORY
Together we will find a cure www.braintumourresearch.org Tel: 01908 867200 | info@braintumourresearch.org 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. #FundingTheFight Our Fundraising Groups Our Member Charities DIVISION OF NEUROPATHOLOGY AND DEPARTMENT OF NEURODEGENERATIVE DISEASE Our Centre of Excellence Partners The Lorn’s Legacy FUNDRA S NG FOR BRAIN TUMOUR RESEARCH Leah’s Fairy Fund MARK “BOMBER” LANCASTER TRUST RIDE4SIMON nd ngin uppor f brain umour se c h FASTER TO A CURE T EAM H OPKIN S WINNING FORDID fundraising for Fundraising Partners
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