This is a photograph of the brain tumour researchers we support at our dedicated research Centres. The photograph was taken at last year's researcher workshop, which was held near our headquarters in Milton Keynes. This year's workshop will take place next month in York. It is a science-driven event, attended only by our researchers, and is a fantastic opportunity for them to converse and collaborate.
It is the embodiment of our mission to create a network of sustainable Brain Tumour Research Centres of Excellence across the UK.
The keynote speaker at the event, addressing the attendees prior to dinner on the first night, will be the Chair of the APPG on Brain Tumours (APPGBT), Dame Siobhain McDonagh. We are proud Siobhain has chosen to take the time away from Westminster to speak to these talented brain tumour researchers.
We are also well into the planning stages of the November meeting of the APPGBT and are in the process of finalising the agenda. Once that has been done, we will be able to share a template invitation with you, for you to send on to your MP, requesting they join the meeting.
Thank you for your feedback following our request to hear what you would look for in our next campaigning webinar. More details for this event (again to be held later in November) will be forthcoming, as will news of a guest speaker who is uniquely positioned to give us an insider's perspective as to the working of the Department of Health and how best we should make our case to the new Government.
So, there are quite a few things at the planning stage, but as our founder, former CEO and now Vice Chair of our trustees Sue Farrington Smith MBE, paraphrasing Benjamin Franklin, always says:
"Fail to plan, and you plan to fail."
This is APPGBT Officer Sarah Owen MP pictured last week at the Luton Walk of Hope. Having become involved through her constituents, the family of Amani Liaquat, Sarah is very supportive of the brain tumour cause, as are a number of MPs who have asked brain tumour related questions, 12 in all this month. So our thanks go out to David Simmonds, Wendy Chamberlain, Kevin Bonavia, Paul Davies, Tom Gordon, Sarah Green, Alex Easton and Satvir Kaur.
If you would like to find out more about the questions asked and answered, please visit our PQs page or go to this page: Find written questions and answers - Written questions, answers and statements - UK Parliament and type 'brain tumours' into the search box.
We are also very grateful to Parliamentary Under-Secretary of State at the Department of Health and Social Care Baroness Merron, who wrote to us this week and ended her letter "Brain cancer research will continue to be a priority into the future, and DHSC, through the NIHR, will continue to fund high-quality science to expand life-saving and life-improving research and care."
Where possible, the opportunity to meet with your MP provides a great opportunity to get them onside, and this photograph from last week shows Brain Tumour Research campaigners Charlotte and Alison Lilley flanking their MP Stuart Anderson.
Their inspiration is Charlotte's father and Alison's husband John. A loving husband and dad with a wicked sense of humour, John was diagnosed with a glioblastoma in 2019 and passed away on 7th May 2023. His family have set up a Fundraising Group known as John’s Army, which they were keen to inform Stuart of, and he declared his support for them locally. Following this meeting, Stuart is also keen to support the APPGBT and to ask questions of the relevant ministers to understand the lack of full deployment of money made available for research back in 2018.
It was a weekend packed full of research updates and information for Brain Tumour Research as we attended the annual meeting of The European Association for Neuro-Oncology (EANO) in Glasgow, where distinguished speakers from around the world presented the latest clinical trial outcomes and highlighted significant advances in basic and translational science.
Professor Oliver Hanemann, Director of our Research Centre at Plymouth, discussed recently published work on a potential new therapy for NF2-related meningiomas. Additionally, Professor Silvia Marino showcased a poster on the SYNGN platform developed at Queen Mary University, which compares healthy cells with cancerous cells to identify genes active in glioblastoma tumours and evaluate them as new therapeutic targets.
Our Director of Research, Policy, and Innovation, Dr. Karen Noble, along with patient advocacy groups and other charity partners, participated in a workshop hosted by Novocure. The session reflected on the findings of the report titled "Challenges and Opportunities in Newly Diagnosed Glioblastoma in the United Kingdom: A Delphi Panel", to which she is a contributing author.
Nicola Gale, our Research Communications Manager who also attended the meeting, said: “It was fantastic to see experts from so many disciplines share their research and open the floor to questions and invite collaborations. Sharing expertise at such conferences is a great opportunity to progress both basic and translational research.
"A particular highlight was a session marking the 30th Anniversary of EANO, which reflected on the changes in glioblastoma research and management over the past 30 years. It celebrated the progress that has been made, particularly around clinical trial and research methods, and promoted a lively discussion as to how we can continue to work together to improve outcomes for patients.”
As part of the One Cancer Voice (OCV) coalition, Brain Tumour Research has united with over 50 charities to call for a dedicated 10-Year Cancer Plan for England. To take this call forward, a letter, signed by all members of the coalition, has been sent to the Secretary of State for Health and Social Care.
The letter echoes the findings from Cancer Research UK's recent report, which highlights that countries with long-term, coordinated cancer plans achieve the most significant improvements in cancer survival rates.
We are coming together in response to the challenges highlighted last month in the Darzi Report, namely that “cancer care in England still lags behind other countries”.
We are proud to be a key stakeholder in this pivotal collaboration and value the OCV coalition. Our collective voice demands that the Government commits to an ambitious and distinct 10-year cancer strategy for England. As cancer campaigners we are clear: the time for decisive action is now.
We look forward to engaging with the Secretary of State on this.
Last year, as part of OCV, we delivered a petition signed by over 76,000 people, calling for the Government to address the cancer emergency in England.
Brain Tumour Research campaigner Uzmah Yunis leaving Downing Street having delivered OCV petition.
Last week, we attended an event celebrating the achievements of Our Future Health, the UK’s largest-ever health research programme, which welcomed its one-millionth volunteer joining the programme, just over a year after it started recruiting.
Our Future Health’s ambition is to create a detailed picture of health in the UK by collecting and linking genetic and other health data for millions of people. As a result, researchers will be able to find breakthroughs that will hopefully help to revolutionise the way we detect, treat and prevent disease.
Dr Raghib Ali, Chief Medical Officer of Our Future Health, spoke about his own father who battled with glaucoma after being diagnosed in his 40s. Dr Ali argued that if his father had been part of the programme, the disease could’ve been detected much earlier and would have been much less debilitating.
Professor Sir John Bell, Chair of Our Future Health and UK Life Sciences Champion, talked about the importance of “having the backing of industry” to keep initiatives, such as Our Future Health, going. Professor Bell made reference to Lord O'Shaughnessy's independent review into commercial clinical trials in the UK. Going forward, to ensure progress, he said this new capacity developed by Our Future Health could be used to run large-scale clinical trials with industry to ask the crucial questions to improve cancer outcomes.
The keynote speech came from Rt Hon Dr Peter Kyle MP – Secretary of State for Science, Innovation and Technology. The Secretary of State (pictured below) said: “The NHS was born out of a crisis – an innovative response to the destruction the war had brought across the country. In every crisis since, we have looked to innovation to provide the answers to that crisis. And today innovation must be the driving force behind radical reform.”
That's it for this week, but we are planning to be back with a new update next Friday. Wishing you all a peaceful time until then,
Hugh, Thomas and Evan
Published Friday 25th October 2024.