A brain tumour diagnosis is a devastating event in any family and, if you have experienced this, you will know how important it is to find a cure and to find the very best model of care. This can only be achieved by deliberate and diligent research and I have long supported the work of Brain Tumour Research and their centres of excellence including the research centre at Plymouth University.
Many will remember that March is Brain Tumour Awareness Month culminating in Wear A Hat Day. Not long after is the London Marathon and these two events raise a significant proportion of the money needed to keep the research centres active.
Both were cancelled due to the coronavirus outbreak but it’s critical that research is not interrupted. This is why I have written both to the Chancellor and the Health Minister calling for gap-funding to see us through this year. With coronavirus medical research is now top of the agenda. Finding a cure for brain tumours has long been at the top of the agenda for families who have lived through this.
Letter to Health Minister, Jo Churchill and Chancellor, Rishi Sunak:
I hope you are well. Thank you for all you are doing.
I am raising a critical issue with you in relation to brain tumour research and specifically the challenge to the ongoing work of the charity that bears the same same name!
Early research into brain tumours takes place at three sites funded by Brain Tumour Research,
Queen Mary University, Imperial College and Plymouth University. There is a real risk to this research both now and in the future due to the coronavirus outbreak. Fund-raising has reduced dramatically and if researchers leave it will be very difficult to ensure the progress made relatively recently is not lost.
Can you find a means to secure funding for Brain Tumour Research and other research charities facing similar challenges?
I include a more comprehensive brief from Brain Tumour Research below.
Brain Tumour Research and Covid-19 briefing document prepared for Derek Thomas MP, Chair APPG on Brain Tumours
- Brain tumours kill more children and adults under the age of 40 than any other cancer
- Brain Tumour Research is losing 70% of expected income
- Support measures for charities do not benefit dedicated research charities - basic medical research is hugely reliant on charities.
- Charity funded research into brain tumours could stopwith “devastating impact for years and years”
- Brain Tumour Research is seeking a one-off £1million grant to keep their research going
The threat from Covid-19 to Brain Tumour Research
Like many charities, Brain Tumour Research receive no funding from the Government; relying on theirsupporters to fund their vital research and campaigning work. The charity regularly commits to research in the year they raise the money from their supporters. As a consequence of the measures implemented in the wake of Covid-19, the charity is facing a 70% loss of income since the lockdown and for the next three months.
The lockdown came during brain tumour awareness month which culminates annually in Wear A Hat Day, Brain Tumour Research’s biggest single fundraising event – taking place in offices, schools, pubs and clubs, this was forecast to deliver over £350,000 – through being fleet of foot and innovative a virtual Wear A Hat Day still delivered just under £100,000. Similarly, the postponement of the Virgin Money London Marathon meant the loss of around £250,000. Just these two events alone have lost the charity c. £0.5 million.
Overall Covid–19 represents an immediate £1 million drop in income and the charity are fearful of dire consequences for research to help improve patient outcomes and, ultimately, find a cure.
The recently announced package of support measures for charities does not benefit dedicated research charities as they don’t provide frontline services. The recent television event, the ‘Big Night In,’ has taken the same position. Brain Tumour Research are unable to divert funds away from research funding to see them through this period and their research spending commitments mean they have a limited reserve capacity.
Sue Farrington Smith MBE Chief Executive “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. Basic medical research is hugely reliant on charities. Indeed, members of the Association of Medical Research Charities (AMRC) such as us contribute 66% of the national spend on cancer research.
The survival of dedicated research charities like ours will be a key point of any financial recovery. Our current financial commitments to continue research funding at our three centres for the next six months is £1.3 million and we may not be able to grant any further funds to keep research going thereafter.
It makes sense, for the Government to make one-off grants to charities such as Brain Tumour Research, to support us during this period and give us the opportunity to provide excellent value for money for the Government in the future, by continuing to support the research it has come to rely on us to instigate and fund.”
Professor Silvia Marino, Professor of Neuropathology, the first female President of the British Neuro-Oncology Society (BNOS) and the Principal Investigator at our Queen Mary University of London Brain Tumour Research Centre of Excellence; “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. For the first time we have been able to build capacity and that would be lost, as would our ability to rebuild quickly.
A break in funding for brain tumour research now would have a devastating impact for years and years.”
Through our centre funding partnerships and the addition of the Cancer Research Support Fund, each £1 we grant to our Centres of Excellence generates around £2.50 invested in brain tumour research. The seed funding we provide attracts other funders, for example at QMUL where The Barts Charity have made a £1.5 million grant to support brain tumour research, and enables researchers to make further applications for funding from organisations such as CRUK and NIHR. If we aren’t able to continue with the initial funding these application’s chances of success will be impacted.
Professor Oliver Hanemann, Director Institute of Translational and Stratified Medicine,
Chair of Clinical Neurobiology, Plymouth University Peninsula School of Medicine and Dentistry and the Principal Investigator at our University of Plymouth Brain Tumour Research Centre of Excellence “The funding support from Brain Tumour Research received for the past five years has enabled our lab to recruit and sustain scientific talent who have the potential to move the dial forward as we strive to fund breakthroughs in brain tumour research. It is no exaggeration to say that without this funding the growth of our research base and the progress we have made would not have happened”
Dr Nelofer Syed Medicine, Senior Research Fellow, Faculty of Medicine, Department of Brain Sciences at Imperial College London and leader of our research team at our Imperial College, London Brain Tumour Research Centre of Excellence “The translational research that Brain Tumour Research is funding at Imperial College is central to a clinical pathway that takes learnings from the scientist’s bench to the patient’s bedside via clinical trials. Whether it is surgical innovations or dietary interventions everything is underpinned by basic, discovery research and if funding for this research is under threat then so is the route to improving patient outcomes.”
Brain Tumour Research are asking for a one-off grant of £1 million to support their vital work and to sustain the research Centres of Excellence that they fund at Queen Mary University London, University of Plymouth and Imperial College as well as Brain UK’s brain tumour tissue registry at Southampton University which collects data of tissue samples held at 26 neuropathology centres across the UK in order to provide samples to UK wide researchers undertaking research into brain tumours.
In May 2018 the Government announced a £40 million funding package over a five year period for brain cancer research to encourage new research and clinical practice to improve outcomes for people with brain tumours. This money was ear marked for quality research applications. Such applications are underpinned by the basic, discovery research that is funded by Brain Tumour Research. If that funding stops the pathway to improved options and outcomes stops and the promise of £40 million investment becomes more distant.
A grant of £1 million will enable Brain Tumour Researchto survive this period and to be in a post Covid-19 position to resume the research funding it has taken the burden of pre Covid-19 thereby benefitting the life sciences and ultimately benefitting society.
£1 million will ensure that we do not lose momentum and risk losing the crucial advances we’ve made over the last decade – as our research gathers pace and new layers of understanding are gleaned, keeping the research going is more important than ever. Current vital research to be funded by Brain Tumour Research includes discovering more about the origins and behaviours of brain tumours, testing ways to starve tumour cells of the energy they use to grow and expand, repurposing existing drugs in order to increase options for targeting brain tumours, identifying mutations in low-grade brain tumours that dangerously accelerate tumour growth and helping determine strategies to implement more personalised treatments for patients.
Patient activist Peter Realf ;“In August 2014 I lost my only son, a young RAF pilot, to a brain tumour aged 26. His death seemed such a terrible waste and greatly affected our whole family. A year later I met the amazing team at Brain Tumour Research, who inspired my daughter to launch a Parliamentary petition which was signed by 120,129 members of the public*. There is still much more work to be done, especially as research funding is being badly affected by the lack of fundraising events possible because of the Covid-19 pandemic. However, there is now an increased awareness of brain tumours within Westminster and across the country, and I have begun to realise that my young man has not died in vain after all. We must not allow their work to stop"
Brain Tumour Research owe it to their supporters and campaigners to keep the momentum going and are determined to minimise the impact Covid-19 could haveon our vision to find a cure.
About Medical Research Charities in the UK
Medical research charities are part of the UK’s world-leading life sciences sector; in 2018 charities collectively invested over £1.3 billion in UK R&D and funded 17,000 researchers’ salaries across universities, the NHS and other bodies.
COVID-19 poses a real threat to the viability of charity-funded research, both now and in the future. Significant losses in fundraising income will have a long-term impact on charity research and on the life sciences sector where charities play essential roles in the ecosystem. As well as providing funding, charities drive innovative collaborations and partnerships with key sector partners and provide assets including data, strategic patient insights and scientific expertise. These roles are essential to achieve the UK’s ambition to be the global hub for life sciences.
Charities are often the only funders in early-stage, preliminary research, de-risking complex research topics that private and public funders can then drive forward. AMRC members also play an important role in supporting the career development of researchers. Charities broker vital collaborations and partnerships across UK life sciences, acting to coalesce research investment around patient priorities and unmet needs. Importantly research charities help to position the UK as world leading in research.
About Brain Tumour Research:
Our vision is to find a cure for brain tumours.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
We are building a network of experts in sustainable research at dedicated Centres of Excellence whilst influencing the UK Government and larger cancer charities to invest more nationally.
We are the only national charity in the UK that is dedicated to raising funds for continuous and sustainable scientific research into brain tumours and we are a leading voice calling for greater support and action for research into what scientists are calling the last battleground against cancer.
We fund research at Queen Mary University London, studying glioblastoma multiforme (GBM) brain tumours, the most aggressive and most common primary high-grade tumour diagnosed in adults. At the University of Plymouth where Professor Oliver Hanemann leads multiple teams at the UK’s leading specialist research centre for low-grade brain tumours. At Imperial College where Consultant Neurosurgeon, Mr Kevin O’Neill is continually working to improve and optimise the complex science of neurosurgery alongside Dr Nel Syed whose focus is the many aspects of brain tumour biology and working in a collaborative manner to translate learnings from the scientist’s bench to the patient’s bedside
In the past five years Brain Tumour Research has granted c £6 million to research and in line with these historic grant awards and, reflecting anticipated growth,Brain Tumour Research aims to award £7.5-10m in the next five years
*Following an unprecedented e-petition where 120,129 signatories demanded more investment in brain tumour research, and the resultant packed and emotional Westminster Hall debate, in February 2018, a Department of Health & Social Care (DHSC) Task and Finish Working Group, was established. Chaired by Professor Chris Whitty, the Working Group closely analysed the complex issues around research into brain tumours in the UK.