On Tuesday 3rd November, supporters, politicians, policy makers, clinicians, researchers and colleagues from across the charity sector came together in Westminster to mark 21 years of campaigning for the brain tumour community.
Public and political awareness of our cause has never been higher, and 2026 has been a year of monumental change for the brain tumour community. With the National Cancer Plan, the Rare Cancers Act and the landmark commitments from the Prime Minister in October, last night was a moment to pause and reflect on all the voices that have come together over two decades to fight for change. Grief, loss and frustration have sadly driven so much of this work. As we celebrate campaigning milestones, we remember everyone we have lost and remain determined in our mission for patients now and in the future.
A celebration of many voices
The evening reflected the breadth of our community. Dame Siobhain McDonagh MP, Chair of the All-Party Parliamentary Group on Brain Tumours and Brain Cancer (APPGBT), sponsored the event and gave a keynote speech. We heard from James Frith MP (Minister in the Department of Health and Social Care) on the Government's view; Hugh Adams of Brain Tumour Research and Cameron Miller of The Brain Tumour Charity on 21 years of campaigning; Archie Goodburn; Professor Anthony Chalmers; clinician Mr Richard Mair; the new Rare Cancers Lead, Dr Robert Metcalf; and Scott Arthur MP.
James Frith MP
James Frith gave a clear rallying cry to the campaigning community to “keep up the pressure” on government and Richard Mair spoke passionately of how “we can find a cure but only if we all work together collaboratively”.
We paid tribute to the many organisations, so many founded by families after devastating loss, that built this movement: the Diana Ford Trust and other Brain Tumour Research Member Charities including Ali's Dream, the Brain Tumour Research Campaign, Anna's Hope, Charlie's Challenge, Finnbar's Force, the William Low Trust, the Yorkshire Brain Tumour Charity, Brainwaves NI, Shay's Smiles and The Giles Trust; brainstrust, Brain Tumour Support and The Brain Tumour Charity, the Tessa Jowell Brain Cancer Mission; and Brain Cancer Justice.
Cameron Miller, The Brain Tumour Charity, and Hugh Adams, Brain Tumour Research,
Turning a shared voice into political influence
Heartbreak brought several charities focused on brain tumours together in 2004 through the United Brain Tumour Campaign, united by determination to change the story for brain tumour patients. They had seen how little was being done for patients and carers, and how little research funding the disease received. By sharing their experiences and refusing to be ignored, they created a collective voice that has grown stronger with every petition signed, letter written, donation made and conversation started.
That same year the group secured the first ever House of Commons debate on brain tumours, which led to the establishment of the APPGBT in 2005. Brain Tumour Research (and its predecessor) has served as its secretariat ever since. Successive Chairs and members from across Parliament have met three times a year, carrying supporters' concerns into Parliament and pressing for better outcomes in research, diagnosis, information, support, treatment and care. Described as possibly one of the most effective APPGs, it has given the brain tumour community a sustained presence at the heart of political decision-making.
Dame Siobhain McDonagh MP, Chair of the APPGBT, sponsored the event
From speaking out to being heard
Supporters' persistence began to turn awareness into progress. In 2007, temozolomide was approved by the National Institute for Health and Care Excellence (NICE) for glioblastoma. In 2009, the movement became Brain Tumour Research, launched at Westminster alongside our Member Charities with one clear vision: to find a cure for all types of brain tumour.
Supporters took the community's calls directly to decision-makers, with the first e-petition focused on funding and awareness in 2011, followed by a parliamentary lobby of MPs in 2012 calling for increased research investment. At the time, campaigners spent more time outside Westminster shouting in than inside engaging in dialogue, but the balance was starting to shift.
Danny Clarke, Patron of Brain Tumour Research, who has supported the charity since losing his sister Margot to the disease
Supporters open the doors of Westminster
Eleven years ago, alongside the Realf family as they marked the first anniversary of the death of their son Stephen, we launched a petition calling for increased research funding for brain tumours.
By 2016, the Realf e-petition had attracted 120,129 signatures. The Petitions Committee's report condemned historic underfunding: “Brain tumour patients have been let down by a lack of leadership from successive governments… The Government must now put this right.” Seventy MPs attended the resulting Westminster Hall debate, and a Task and Finish Working Group was established, chaired by Professor Chris Whitty.
Its report validated the dedicated research centre model and supported “dedicated brain tumour research centres to grow research capacity, capability, and senior research leadership across all career stages”. This report will now act as the basis of the expert review announced by Government and led by Professor Anthony Chalmers.
Professor Chalmers, co-Director of the Scottish Brain Tumour Research Centre of Excellence, and Dan Knowles, CEO of Brain Tumour Research
Converting campaigning into investment
The report triggered the 2018 Government announcement that £40 million was being made available via the National Institute for Health and Care Research (NIHR). However, as the APPGBT was later to uncover, money being “available for allocation” and money actually reaching researchers were very different things.
The APPGBT's 2023 landmark report, Pathway to a Cure, laid bare the fact that research into brain tumours continued to be neglected by Government. Through the APPGBT, the NIHR was brought to the table to unpick why the money hadn't been fully deployed. Parliamentarians, charities and campaigners have relentlessly pursued this question with Ministers and the Civil Service since, and this resulted in the Government announcements at the end of 2025 unlocking millions of pounds for clinical trials infrastructure.
Building momentum for lasting change
2026 has been the year that so much hard work, frustration and determination turned into tangible progress. The National Cancer Plan for England made it abundantly clear: we cannot improve cancer survival overall if we do not tackle rare cancers, including brain tumours. We played a key role in the consultation, and your support helped make the case for Government to prioritise the biggest cancer killer of children and adults under the age of 40.
Shortly after, the Rare Cancers Act was passed, enshrining the needs of brain tumour patients, and thousands more like them, in law. More research, better access to clinical trials and smoother drug approval will improve survival for brain tumour patients. Together with charity partners, we helped shape the Act, and we continue to work with them and Scott Arthur MP to deliver its promise.
This summer, a petition led by Brain Cancer Justice gathered nearly 110,000 signatures and secured a Westminster Hall debate. That debate, and the momentum behind it, set the backdrop for Archie Goodburn's courageous appearance on BBC Breakfast in August. His emotional appeal to the Prime Minister culminated in the most significant commitments from Government on brain tumours we have ever seen.
Archie Goodburn has campaigned passionately since his own brain tumour diagnosis
No single organisation could have achieved this alone. Our work is not done until we have a cure for all types of brain tumour, and until patients receiving a diagnosis are presented with options, not simply told to get their affairs in order and say their goodbyes. Sometimes the path to change can feel slow, but together we will keep holding Government to account, just as this community has for two decades. Your determination and courage to keep making your voices heard inspire us all to keep pushing for change.
As we come to the end of 2026 we can look forward with hope. The rate of scientific discovery has never been faster, and our cause is more prominent than it has ever been.
Together we will turn that hope into action.
Together we will find a cure.
Related reading:
