As we reflect on our campaigning year there are many highlights to note including the launch of the APPGBT inquiry, the #braintumourpetition achieving 112,260 signatures and the Level Up and Stop the Devastation Petition Report that followed – which was handed to the PM.
There were questions at PMQ’s, questions for the Secretary of State for Health, questions in the house of Lords and there were four virtual meetings of the APPGBT including presentations from the NCRI, the Tessa Jowell Brain Cancer Mission and just a fortnight ago we had the extraordinary event featuring The Wanted singer Tom Parker alongside, Dave Bolton, Holly Roberts and Nicki Hopkins.
So many different occasions during 2021 raising awareness both inside and outside Westminster. If you wish to read a fuller recap of the past campaigning year, please visit www.braintumourresearch.org/media/our-blog
The four APPG meetings were attended, virtually, by 26 Parliamentarians with others sending representatives from their offices. These MPs were motivated to act by your lobbying, asking them to attend the meetings or ask ministerial PQs.
Since this time last year there are so many more of you that are politically active.
The number of campaigners signed up to receive these weekly updates has grown by 37% in 2021 and the number of constituencies where we have a brain tumour campaigner has leapt from 366 to 475.
In 2021 we have had meetings with a number of interested MPs ready to add their voice to our cause and have connected other MPs to pharma companies and clinicians as we seek to make the connections that enable the joined-up thinking that will lead to progress.
Why do we do this?
We do this because our vision is to find a cure for all types of brain tumours and our mission is to increase the UK investment in brain tumour research.
What we know with certainty is that financial input into research underpins clinical innovation and we can illustrate that with an update on what has been going on at our dedicated research centres in 2021.
Earlier in the year, our Centre of Excellence at the University of Plymouth published papers on how a research breakthrough could spare patients surgery and highlighted the importance of personalised medicine in developing more effective, targeted treatments for the nervous system disorder neurofibromatosis (NF).
The full Plymouth paper can be viewed in Cancer Research
BRAIN UK at the University of Southampton is the world’s first national virtual brain tissue bank, a unique and hugely important resource for researchers working across the UK, funded by Brain Tumour Research.
BRAIN UK has recently had a paper published online in the journal Neuropathology and Applied Neurobiology and the paper’s abstract explains that the purpose of BRAIN UK (the UK BRain Archive Information Network) is to make the very extensive and comprehensive National Health Service (NHS) Neuropathology archives available to the national and international neuroscience research community.
The archives comprise samples of tumours and a wide range of other neurological disorders, not only from the brain but also spinal cord, peripheral nerve, muscle, eye and other organs when relevant. BRAIN UK was an initiative of our member charity brainstrust, founded after the recognition of the importance of this large tissue resource, which was not previously readily accessible for research use. BRAIN UK has successfully engaged the majority of the regional clinical neuroscience centres in the United Kingdom to produce a centralised database of the extensive autopsy and biopsy archive. Together with a simple application process and its broad ethical approval, BRAIN UK offers researchers easy access to most of the national archives of neurological tissues and tumours (http://www.brain-uk.org). The range of tissues available reflects the spectrum of disease in society, including many conditions not covered by disease-specific brain banks, and allows relatively large numbers of cases of uncommon conditions to be studied. BRAIN UK has supported 141 studies (2010-2020) that have generated 70 publications employing methodology as diverse as morphometrics, genetics, proteomics and methylomics. Tissue samples that would otherwise have been unused have supported valuable neuroscience research. The importance of this unique resource will only increase as molecular techniques applicable to human tissues continue to develop and technical advances permit large-scale high-throughput studies.
You can explore the work we fund at BRAIN UK more fully in this article from neuropathology and applied neurobiology
The team at the Brain Tumour Research Centre at Imperial College has welcomed a new researcher funded by the charity.
Dr Sophie Morse received her PhD in Bioengineering from Imperial College in 2020. With her research, she has improved the way drugs are delivered to the brain using a non-invasive and targeted ultrasound technology combined with microbubbles. Now being funded by Brain Tumour Research, she will apply this ultrasound technique to the field of brain sciences, specifically to brain tumours.
Focused ultrasound is an exciting area of brain tumour research, offering a targeted, less-invasive way to cross the blood brain barrier for more effective drug delivery to the brain. This research, which could improve outcomes and treatments, brings hope to brain tumour patients and their loved ones.
Earlier this year from Imperial there was news of a clinical study into non-invasive surgical techniques and there is real excitement about a paper to be published early in 2022. We will provide a link to the full paper in the new year.
It has been an extraordinary year at the Brain Tumour Research Centre at Queen Mary University of London (QMUL) with funding announcements into paediatric brain tumour research being made in May, August and just last week Ali’s Dream, a founding Member Charity of Brain Tumour Research, announced it is to grant £250,000 to support research into childhood brain tumours.
Funding means new researchers which means we will be able to bring you more stories like this one as our scientists have found a new way to starve cancerous brain tumour cells of energy in order to prevent further growth and that this could see a breakthrough in the way that children with medulloblastoma are treated in future.
In the adult GBM space there was also news this year and just last month a significant GBM breakthrough was reported and covered widely in the media.
We asked Principal Investigator at QMUL Professor Silvia Marino for her comments on the past year and she told us:
“I think that 2021 is the year that the centre model as proposed by Brain Tumour Research, which has brought both stability and sustainability to my team at QMUL, has really started to deliver results. I have been able to grow the team and I am really excited by the talented researchers we have been able to attract into this uniquely complex field. Last months’ GBM paper was a real breakthrough of which we are all proud and determined to see through to a trial stage. This gives me grounds for great optimism – it wasn’t always like this – but as we approach 2022 I feel we can really move the dial and improve options and outcomes for brain tumour patients. With creative fundraisers and dedicated campaigners supporting gifted and innovative scientists the only way is forward for Brain Tumour Research and brain tumour researchers.”
Professor Marino knows the importance of ‘dedicated campaigners’ and for us you are a source of both pride and humility through your engagement, your willingness to share, and your kindness in letting us know how much you value our support in pushing forward the agenda we so believe in.
At the close of 2021 we asked the Chair of the APPGBT Derek Thomas MP (pictured left at our Centre of Excellence at the University of Plymouth) for his thoughts, and he told us:
“From my position as Chair of the APPGBT I think brain tumour campaigners can look back on 2021 with a sense of achievement. The brain tumour petition set the tone and to get the resultant report into the hands of the PM was impactful and a visible demonstration on how far reaching the cause of brain tumour patients and their families has become. I have noted a growing number of my fellow MPs attending our APPGBT meetings this year and more PQs being asked of ministerial colleagues. I take my hat off to all the campaigners that are using their influence to make this happen and the progress made gives me real optimism for 2022 where our inquiry “Pathway to a Cure’ will be taking centre stage in our APPGBT business.
I’m acutely aware that what unites them is a deep tragedy in their own families which both humbles and inspires me and my parliamentary colleagues.
I understand, of course, that this time of year can be very difficult for some of you reading this for whom this devastating disease his left an indelible mark on you and on your families. Please take heart from the campaigning we are engaged in together because it is by working together that we will get closer to the cure we so desperately need. Thank you and God Bless.”
So, roll-on 2022, my first campaigning update will be emailed out on Friday 7th January and if you would like that sent directly to your inbox please let me know - firstname.lastname@example.org
Thank you for what you have done, what you are doing and what you will do in 2022 as we strive to increase the funding for the research that holds the key to unlocking the unique brain tumour puzzle.