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

Widow’s £1 million donation sees launch of new Brain Tumour Research Centre of Excellence focused on deadliest childhood cancer

by Sue Castle-Smith

A £1 million donation from a Gloucestershire widow who lost her husband to a brain tumour has enabled the charity Brain Tumour Research to establish its fourth Centre of Excellence which opens on the Sutton campus of The Institute of Cancer Research, London, today. (Wednesday 6th September)

Retired college lecturer Mary Scott’s donation, the largest single gift in the charity’s history, is being invested in the hope of finding a cure for the deadliest of all childhood cancers.

The money is in memory of businessman Mike Scott. Having made his fortune in business on the Isle of Man, Mike and Mary were enjoying early retirement in The Cotswolds when he started to experience symptoms including confusion and dizziness. Mike was diagnosed with a grade 4 glioblastoma (GBM), an incurable and fast-growing brain cancer, and underwent surgery and treatment. But the tumour, the most commonly diagnosed high-grade brain tumour in adults, grew back and there were no further treatment options. Plans were being put into place for Mike to spend his final months at home when, tragically, he collapsed at a family barbecue. He died just a few days later, in June 2020 aged 69, with Mary at his hospital bedside.

Mike’s legacy has enabled the charity Brain Tumour Research to bring forward plans to open its fourth Centre of Excellence with an initial funding agreement of £2.5m. Based at The Institute of Cancer Research (ICR) under the leadership of Professor Chris Jones, the Centre will focus on identifying new treatments for high-grade glioma brain tumours in children and young adults. The Centre 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.

Ahead of today’s opening, which was also attended by the couple’s son Ben, aged 47, Mary, 71, from Moreton-in-Marsh, Gloucestershire, said: “Mike and I had been together since we were youngsters. I miss him terribly and, since his death, I have periods of being very low and wondering how I can keep going but I know I have to somehow find a way to find peace; I have to walk my own path and do so in my own time. It can’t be right in these days that it’s a death knell to be told you have this brain tumour.

“I count myself very fortunate to be able to make this substantial donation. Mike adored children so it’s especially fitting that this new centre will focus on finding a cure for high-grade tumours in children. To think of those poor parents whose children are affected by brain tumours is absolutely dreadful.

“My hope is that, with this legacy, Mike’s death won’t have been in vain, that his name will live on and that the money will go some way towards finding a cure.”

Among those attending today’s opening were Leader of Surrey County Council, Tim Oliver and his wife Debi, a retired GP, who lost their daughter Emily to diffuse midline glioma (DMG) at the age of 21 in July 2019, 18 months after her diagnosis. Student nurse Emily underwent NHS standard of care and then travelled to Germany for privately-funded treatment including a personalised vaccine and radiotherapy.

Debi said: “The treatment we sought abroad helped to some extent but then Emily deteriorated and spent her final weeks in a hospice. We will never get over her loss. The options for families faced with this devastating diagnosis are so limited due to a lack of funding for research. We simply must do better for our children and we welcome this new Centre which brings much-needed hope.”

The new Brain Tumour Research Centre of Excellence is focused on high-grade gliomas in children and young adults like the one which killed student nurse Emily Oliver, pictured with parents Debi and Tim.

Dr Karen Noble, Director of Research, Policy and Innovation, at Brain Tumour Research, said: “We are delighted to be able to hold this landmark event during September which is Childhood Cancer Awareness Month. We are optimistic that this work will lead to trials within the next five years so we can give real hope to families in the future. The situation faced by families today is appalling with many feeling they have no option but to seek unproven and costly treatment abroad. It is vital that attention is focused on this most deadly of childhood cancers. We are extremely grateful to Mary and to all of our supporters whose commitment and hard work has made this new Centre possible. But we do need the Government to step up and do more and not to rely so much on investment from charities.”

Professor Chris Jones, Professor of Childhood Brain Tumour Biology at The Institute of Cancer Research, London, said: “The Centre will act as an international hub for the development of new treatments for children and young adults with these terrible brain tumours. Improving outcomes for children with these types of tumour is crucial if we are to make progress.

“We are 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.” 

Prof Jones in the lab (credit: The Institute of Cancer Research)

His experienced team will lead the way in scientific research into paediatric-type diffuse high-grade glioma brain tumours such as DMG.

  • Paediatric-type diffuse high-grade glioma (PDHGG) are a collection of brain tumours which include diffuse hemispheric glioma (DHG), and diffuse midline glioma (DMG) such as diffuse intrinsic pontine glioma (DIPG). These affect children and young adults and have 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 these tumours is just nine to 18 months

The new Centre will generate laboratory data to support new clinical trials and will span the gap between basic biology and clinical benefit for children and young adults with high-grade glioma. Crucially, the best ideas from the lab and others, as well as from drug companies, will be assessed and those most likely to be beneficial to patients will be selected. The Centre will help prioritise the most promising approaches for clinical translation within established clinical trial platforms across a worldwide consortium, called CONNECT.

The team at the ICR

The ICR was chosen from a strong field of applicants following a robust peer review process. It joins Brain Tumour Research Centres of Excellence at the University of Plymouth, Queen Mary University of London, and Imperial College London and taking the charity another step towards its goal of creating a network of seven sustainable Brain Tumour Research Centres of Excellence across the UK.

Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.

      -ENDS-

For further information, please contact:

Sue Castle-Smith Head of PR & Communications at Brain Tumour Research on 07887 241639 or susan@braintumourresearch.org

Notes to Editors

The vision of Brain Tumour Research is to find a cure for all types of brain tumours. Our mission is to increase the UK investment in research to £35 million a year while fundraising to create a sustainable network of seven Brain Tumour Research Centres of Excellence across the UK.

Brain tumours kill more children and adults under the age of 40 than any other cancer yet, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.

A powerful campaigning organisation, Brain Tumour Research is the leading voice of the brain tumour community across the UK. We help to influence government policy and national investment decisions through our ongoing secretariat for the All-Party Parliamentary Group for Brain Tumours (APPGBT). We also challenge the larger cancer charities to increase their commitment to funding research into brain tumours.

Key statistics on brain tumours:

  • Brain tumours are indiscriminate; they can affect anyone at any age
  • Brain tumours kill more children and adults under the age of 40 than any other cancer
  • Just 1% of the national spend on cancer research has been allocated to brain tumours since records began in 2002
  • One in three people know someone affected by a brain tumour
  • In the UK, 16,000 people each year are diagnosed with a brain tumour
  • Brain tumours kill more children than leukaemia
  • Brain tumours kill more women under 35 than breast cancer
  • Brain tumours kill more men under 70 than prostate cancer
  • Just 12% of those diagnosed with a brain tumour survive beyond five years compared with an average of 54% across all cancers

Please quote Brain Tumour Research as the source when using this information. Additional facts and statistics are available from our website. We can also provide case studies and research expertise for the media.

The Institute of Cancer Research, London, is one of the world's most influential cancer research organisations.

Scientists and clinicians at The Institute of Cancer Research (ICR) are working every day to make a real impact on cancer patients' lives. Through its unique partnership with The Royal Marsden NHS Foundation Trust and 'bench-to-bedside' approach, the ICR is able to create and deliver results in a way that other institutions cannot. Together the two organisations are rated in the top four centres for cancer research and treatment globally.

The ICR has an outstanding record of achievement dating back more than 100 years. It provided the first convincing evidence that DNA damage is the basic cause of cancer, laying the foundation for the now universally accepted idea that cancer is a genetic disease. Today it is a world leader at identifying cancer-related genes and discovering new targeted drugs for personalised cancer treatment.

The ICR is a charity and relies on support from partner organisations, funders and the general public. A member institution of the University of London, it is one of the UK’s leading higher education institutions, placing first for biological sciences and second overall in the definitive ‘REF2021’ rankings of UK university research quality, impact and environment, and provides postgraduate higher education of international distinction.

The ICR's mission is to make the discoveries that defeat cancer.

For more information visit  ICR.ac.uk

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