FAQs

Thank you so much for your support and helping us to fund the fight! There are several ways you can pay this money in to us:

• Donate to us directly – make sure to leave us a message to let us know the reason for your donation.

• Pay directly into the bank – pay to Brain Tumour Research,Sort Code 60-02-09, Account No. 84040319

• Over the phone using credit or debit card – call 01908 867200

• By cheque made payable to Brain Tumour Research and sent to Brain Tumour Research, Suite 37, Shenley Pavilions, Chalkdell Drive, Shenley Wood, Milton Keynes, MK5 6LB

Please email supportercare@braintumourresearch.org and request a sponsorship form, providing details of the event that you are holding. We provide our forms in this way so that we can connect with you about your event and answer any questions you may have.

We are registered with the Charity Commission of England and Wales, as well as the Scottish Charity Regulator. We specifically fund research into brain tumours and researched findings are published for the benefit of the global brain tumour community. Any research findings will therefore benefit any person that is diagnosed with a brain tumour, regardless of where they live.

Our mission is to find a cure for all brain tumours, and our medium term mission is to establish seven dedicated Centres of Excellence across the whole of the UK and to provide funding for their sustainable research.

We can provide you with both general and campaign specific leaflets and posters depending on the type of event you are holding, as well as the newest issue of Believe, the UKs leading magazine for brain tumour activists. Believe publishes three times a year and can also be read online.

Our Believe magazine includes a list of loved ones remembered for which we received in-memoriam donations during a period of time from the last Believe magazine to the current Believe Magazine's design and print deadlines.  If you think we have excluded your loved one by mistake please do not hesitate to contact supportercare@braintumourresearch.org and we will include them in the next Believe Magazine with love and thoughts.

Believe Magazine is the UK's leading publication for brain tumour activists. It is written and printed primarily for distribution in the UK. However, we also publish the magazine online.

If you live in the UK and would like to receive your own copy through the post (we publish three times a year) then please send your address details to supportercare@braintumourresearch.org and we will be sure to add you to our mailing list.

All of our items for sale on eBay carry a cost for postage, packaging and processing the order. If you are ordering multiple items, it may be cheaper to order directly over the phone – call us on 01908 867200 weekdays between 10am and 4pm. 

As you can appreciate, our patrons are incredibly busy and we are very careful about the amount of times we pull on their generosity. We will ask our patrons to get involved in national events or to act as a spokesperson on our behalf, but wouldn’t normally ask them to get involved in a regional event unless it was local to them. If possible, members of the Brain Tumour Research team are able to attend events on a case by case basis. 

We are very proud and appreciative of the support we receive from many celebrities.

The majority have been personally affected by brain tumours, be it through personal diagnosis or the effects felt through their friends or family receiving a diagnosis. The impact they bring to our awareness raising mission is significant but this impact is delivered by voluntary effort.

Our policy is that we do not pay those with a high profile to support us, and in fact it isn’t something that we have been asked to consider.

Having lost her sister’s little girl to a brain tumour at the age of seven in 2001 and having co-founded Brain Tumour Research, Sue our Chief Executive is passionate about her role.

As Chief Executive, Sue is committed to delivering the vision of the charity and ensures that as much of the money raised as possible is invested into brain tumour research at our three Centres of Excellence as well as campaigning to raise awareness to increase the national investment in brain tumour research and get us closer to a cure

Sue does not lead the charity for financial gain and is not paid a six-figure sum. What’s more she often donates to the cause herself through both her own fundraising activities and by donating to some of our supporters on their JustGiving pages.

Our costs, including remuneration details for the Leadership Team, are publicly available in our Annual Report and Accounts.

Our Equality Policy takes account of relevant legal standards. We aim to abide by and promote equality legislation by following both the letter and the spirit of it in this area. We try to avoid unjustified discrimination which we recognise is a barrier to equality, diversity, inclusion and human rights.

Read more

If you wish to volunteer for us, you must be based in the UK.  Unfortunately, we cannot accept overseas applications.

We focus all our activities around helping to fund sustainable research into brain tumours at our Centres of Excellence. We welcome visits to our labs to see our research in action – find out more about our lab tours here. 

For support and advice about brain tumour of all kinds, we recommend contacting brainstrust, one of the UKs leading brain tumour support organisations.

If you live outside the UK, The International Brain Tumour Alliance (IBTA) is a network of support, advocacy and information groups for brain tumour patients and carers in different countries.

We do not offer medical advice on individual diagnosis. We do have information about all types of brain tumours and their symptoms available to help patients understand this disease.

Our member charity brainstrust is one of the UKs leading brain tumour support organisations a brain tumour support group who offer help to anyone affected by brain tumours. We recommend contacting them for further information.

There are over 120 different types of brain tumour and in the vast majority of cases it is not known what causes them. Brain tumours are indiscriminate; they can affect anyone at any age. Approximately 16,000 people are diagnosed with a brain tumour every year. Find out more.

If you are getting unusual headaches and are worried you should always check with your GP who will refer you to a specialist if necessary. You can find further information on the symptoms of brain tumours here. 

We have information about tumour types, and links to find out more, available here.

There are over 120 different types of brain tumour, each of which have their own characteristics. Therefore, it is unlikely that we will be able to develop a single “cure”. Rather, we will need to target the treatment at the tumour type.

In order to do this, we need to really understand what changes cause the tumour to develop. Then we can identify targets for drugs to kill the cells, and ultimately cure brain tumours.

Find out more about our Research Centres of Excellence.

Our website details the research being undertaken at each of our Research Centres of Excellence, as well as our research strategy. If you have any specific questions about the research at any of our Centres, please do not hesitate to contact us.

We call for the Government to create a national register of all site-specific cancer research to track all research work, grants and results across the UK to prevent duplication.

The following companies can provide travel insurance for patients with brain tumours on a case-by-case basis. 

• All Clear

• Free Spirit

Brain tumours have different effects on people based on a number of different factors, including the fact that there are over 120 types of brain tumour. The clinical team treating you is best placed to navigate this issue based on your medical history. This help sheet created by Guy’s and St Thomas’ NHS Foundation Trust provides an outline of this issue.

Our charitable objectives are focused on funding research into brain tumours and we do not provide direct financial assistance to patients and their families. 

For more information, please contact our member charity brainstrust, one of the UKs leading brain tumour support organisations.

For patients living in Wales, Scotland and Northern Ireland, the local Governments decide independently how they spend their money on health. None of them have their own cancer drugs fund as such, but they are looking at ways to improve access to cancer drugs.

Research in this area has been inconclusive, producing no hard evidence. Read more on our blog.

Yes, this is being carried out in our Research Centre of Excellence at University of Plymouth by Professor Oliver Hanemann and his team, who have a world-leading track record in researching low-grade brain tumours..

We endorse the Association of Medical Research Charities position statement on the use of animals in medical research, and as the scope of our research expands and moves closer to progressing potential treatments through to clinical trials, some of the research activities we fund now unavoidably involve mouse models and fruit fly models in order to fulfil current legislative requirements.

Wherever possible, we want the research that we fund at our dedicated Centres of Excellence to use human brain tumour tissue. Indeed we have proactively funded research into creating and sustaining animal-free research using models that only involve human brain tumour cells, donated through appropriate consent given by patients undergoing surgical procedures.

We also fund BRAIN UK at Southampton University, the country’s only national tissue bank providing crucial access to brain tumour samples for researchers from the archives of clinical neuroscience centres in the UK, effectively covering about 90% of the UK population, and an essential component in the fight to find a cure for brain tumours.

The research priorities at our Centres of Excellence are based on finding ways to innovate new curative treatments for brain tumours which will likely have the best outcomes for patients. We are not currently funding any research into cannabinoids, but we recognise that the use of cannabinoids for the management of brain tumours is important topic and are closely monitoring the ongoing developments in this area, including contributing to governmental Inquiries and consultations where possible, and we do publish news and blog updates on this subject on our website. Go to our Search function and type in Cannabis, Cannabinoids or CBD to see our latest updates. If you would like to find out more, please contact us today.

The first thing to do is to speak to your medical team They will know any suitable clinical trials at the centre where you are being treated, and may be aware of others elsewhere that you may be eligible for.

If you are enquiring about trials at a different centre to the one you are being treated at make sure you are able to tell them your type of tumour the grade and, for drug trials, the type of genetic mutations your tumour has. Your medical team will be able to supply this information after they have taken a biopsy- and possibly following an MRI scan.

You can try searching online using your tumour type and the country in which you are looking for a clinical trial. The UK based NHS resource Be Part of Research is an excellent place to search for UK based clinical trials for brain tumours or your search could be expanded to include Europe with The European Union Clinical Trials Register and the US with ClinicalTrials.gov.

Also online you can register your interest in UK based brain tumour research so that researchers can get in touch if they begin a suitable study. National Institute for Health Research (NIHR) BioResource is one such resource and others, as well as further information on UK based research into brain tumours can be found on our website.

Currently we don’t fund clinical trials as we prioritise funding groundbreaking early-stage research in order to discover new treatments that will lead to cures. Clinical trials are expensive to run and funding for these is available through the recently announced Government funding.

As a result of this funding, good quality clinical trial proposals will be considered by the National Institute for Health Research, which is prioritising brain tumour proposals that meet its criteria.  

Brain tumours are the most common type of solid tumour in children. Every year, almost 400 children in the UK aged nine or less are diagnosed with a brain tumour and almost 100 children in the UK die from one each year. Approximately, 4% of those diagnosed each year with a brain tumour are children.  We recognise the importance of working with families to raise awareness and shine a spotlight on this devastating disease and we are leading the way to increase the national investment in research to help improve outcomes. This year we will spend around £2.5 million on brain tumour research through our three Research Centres of Excellence. These Research Centres are working tirelessly to gain a deeper understanding of child and adult brain tumours.  With respect to childhood brain tumours, our researchers are tackling these from many different angles as outlined below:

• Plymouth University is investigating new ways to treat Neurofibromatosis type 2 (NF2), an inherited condition that can be diagnosed from age five causing tumours to grow along the nerves and can lead to DIPG tumours.
• During 2021 we created a paediatric sub-group at Queen Mary University of London with three new researchers working towards developing new treatments for childhood brain tumours including: medulloblastoma, DIPG, childhood glioblastoma and ependymoma
• Imperial College London has been investigating the role of arginine deprivation in childhood glioblastoma multiforme (GBM).

Brain Tumour Research is committed to gaining a deeper understanding of brain tumours to help us get closer to a cure. Our model of funding is to invest in long-term research, building critical mass of expertise. We do this by establishing partnerships at key UK universities and create Brain Tumour Research Centres of Excellence.   We are supporting three Centres of Excellence at University of Plymouth, Imperial College London and Queen Mary, University of London.

Any funding opportunities would be available via the Centres, please do review our website pages for further information on the research conducted at these sites plus contact details for the Centre leads.

Our latest report on National Research Funding into brain tumour research reveals the true impact of the funding landscape on the lives of brain tumour patients and their families. Statistics on funding levels for Government bodies and some of the UK’s leading cancer charities have been revealed for the first time through a data request for unpublished information from the National Cancer Research Institute (NCRI) and direct requests to some of their partners.

The charity Brain Tumour Research has used data sources from national statistics authorities for the UK and devolved nations to analyse mortality, incidence and survival data to expose the current impact of the historical underfunding into brain tumour research. The charity also commissioned a poll of over 2000 UK adults, conducted by Populus, this year.

The national spend on brain tumour research needs to increase to £30 - £35 million, in line with breast cancer and leukaemia.

At current rate of spend it could take 100 years to catch up and find a cure.

We want government bodies, CRUK and other larger charities to increase their investment in brain tumour research.

We also want the national public and organisations to donate to, and fundraise for, brain tumour research charities.

We have been campaigning and fundraising since we launched in 2009, but we don’t believe that decades of underfunding can, or should, be corrected by one charity. The larger cancer charities and the Government have important roles to play here.

We will continue to shine a spotlight on this issue, as well as raising millions for research from our passionate supporters.

Cancer Research UK pledged to increase investment in brain tumours, amongst a few others they term “cancers of unmet need” in 2014. We welcome this new focus, but there are decades of research to catch up on, so much more investment is needed.

The Petitions Committee published a report on research into brain tumours earlier this year, following 120,000 people signing our petition. The Government then responded to its report, agreeing that action was needed and making various commitments including the setting up of a new task and finish working group.

Research into brain tumours hasn’t been sufficiently funded partly due to the way research funding is awarded. During the Parliamentary debate on this issue in April 2016, the then Health Minister, George Freeman MP, acknowledged:

“Here is the challenge: our system works on the basis of bids and of accelerated funding. Once funding starts to drive clinical and academic results, that generates more funding, which drives more research. The danger in that model is that, unless that initial critical mass can be achieved, things can get squeezed out.” 

Tragically for so many, research into brain tumours has clearly been squeezed out.

Also, brain tumours are a complex challenge for scientists:

• There are over 120 different types of brain cancer.

• The brain is a very delicate organ.

• The brain is surrounded by the blood-brain barrier that many current cancer drugs simply cannot cross.

We are campaigning for parity in funding, for the sake of patients and families across the UK. All forms of cancer should be fairly funded, including breast cancer and leukaemia, as more research is still needed to find cures.

We are asking for the national spend on brain tumour research to increase, to be in line with the investment in breast cancer and leukaemia (£30-£35 million p.a.).

Our report reveals that 86% of the national spend on research into brain tumours was funded by charities last year. The Government must step up.