Brain tumour community demands change

24 August 2026 | Blog, Campaigning and research, Collaborations, News, Support

The strength of a community coming together

Lucy Wilkinson, Head of Support Services at Brain Tumour Support, reflects on the impact of recent national news coverage about brain tumours, the hard work which continues to go on across the brain tumour community and the importance of moving forward together.

It has been an important few weeks for the brain tumour community following swimmer and brain tumour campaigner Archie Goodburn’s powerful TV interviews. We appreciate the impact that he has had both within the brain tumour community and in the wider public in bravely using his platform to speak honestly and openly about what it is like to live with inoperable brain tumours.

The clarity and passion behind his direct plea for more action on brain cancer has generated extremely emotional news coverage and had a powerful effect to highlight the frustrations and desperation felt, sadly, by so many people in our community. We are acutely aware of the strong and complex emotions that this coverage can trigger, and also understand the questions that arise around how we can all contribute to that call for change.

The need for more

There is already a huge amount of work being undertaken to better understand brain tumours and develop new approaches to treatment, with researchers around the world exploring some really interesting questions. But there is still so much we don’t know and the journey from an early research finding, to a treatment that is available to patients, can be long. More research, more clinical trials and greater access to promising treatments are all essential if we are to see the progress that people affected by brain tumours desperately need.

Newly emerging research on timing

There is some genuinely interesting research taking place around the timing of treatment, as researchers are increasingly interested in is what happens to a brain tumour immediately after surgery. A recent article in The Independent, published following Archie’s interviews, highlighted new research into the timing of chemotherapy following surgery for glioblastoma.

For glioblastoma, surgery is usually followed by radiotherapy and chemotherapy, and there is normally a period of post-surgery recovery before further treatment begins. Researchers are now exploring what happens to any remaining tumour cells during this period, after research presented in 2025 found evidence that surgery can trigger changes in the environment around remaining glioblastoma cells, including how they interact with the body’s immune system. Researchers are now investigating whether understanding these changes could identify new opportunities to target tumour cells during this “critical window of vulnerability”.

This is still early-stage research, and it does not mean that people should have chemotherapy earlier than currently recommended. More research and clinical trials are needed to understand the impact of intervening during this time window.

Other researchers are also looking at ways of closing the gap between surgery and treatment. One phase 3 trial, for example, is investigating whether delivering a form of radiation immediately after surgery could reduce the period in which glioblastoma can progress before standard chemo and radiotherapy begins.

These approaches are still being investigated, but they demonstrate something important: researchers are looking at the whole treatment pathway differently and asking whether we can do better.

The promise of targeted treatments

We are also seeing encouraging developments in targeted treatments for certain types of glioma. Following this year’s approval from the National Institute for Health and Care Excellence (NICE) for Vorasidenib to be an option for people aged 12 and over with grade 2 astrocytoma or oligodendroglioma with an IDH1 or IDH2 mutation, another IDH1-targeting drug, Safusidenib, is currently in clinical trials, though not yet in the UK.

The ongoing SIGMA study is looking at the drug’s potential for people with IDH1-mutant gliomas, including as a maintenance treatment for some people with higher-grade astrocytoma following standard treatment. There are also studies looking at using Safusidenib around the time of surgery, giving researchers an opportunity to study how it interacts with the tumour and whether treating the tumour before and after surgery could offer benefits.

Additional studies are exploring immunotherapy, targeted treatments, drug delivery, vaccines, combinations of existing medicines and new ways of understanding the biology of brain tumours.

The power of working together

Of course, despite all of the current research, and issues around brain cancer reaching a much wider audience on the news, it is an area of healthcare that is still desperately in need of greater awareness, support and investment. It’s crucial that we continue the impetus of recent weeks, and there is a new determination to bring like-minded charities, organisations and individuals together which is very encouraging. Voices can be amplified when we come together, and shared goals and passion are more effective when we are united.

To this end we are involved in meeting with our fellow charities and key stakeholders to understand how we can bring lasting benefit and progress with this highlighted focus; meeting with key campaigners to offer our support; and our Support Professionals engaging in conversations about it all at our online and face-to-face support groups.

Hope for the future, support for today

At Brain Tumour Support, we have seen how this increased exposure in the news also brings up a range of emotions, particularly for anyone directly affected by brain tumours. For some, seeing these issues discussed so openly may bring reassurance that their experiences are being heard, and hearing about new research and potential treatments can bring hope. For others, it may feel difficult or overwhelming, and can, understandably, raise questions about what options might be available now, or what it could mean for their own situation. This can be hard and we have been meeting and speaking with patients and families offering additional support.

If you have been affected by a brain tumour, we want you to know that whatever this recent coverage has brought up for you, you are not alone. We are here to listen, to provide support and to help you navigate the challenges that may face you.

We also want to add our voice to the wider call for progress. We welcome the growing attention on research into brain tumours and the need for better treatment options, a future with more hope and better outcomes. However, in this moment we are acutely aware that, for many individuals and families, the need for support is immediate and personal, so we are here for the people who need support today.

Lucy Wilkinson, Head of Support Services, Brain Tumour Support

Please note: Research mentioned in this article is at different stages of development. Clinical trials have specific eligibility criteria and not every treatment will be suitable or available for every person. Treatment decisions should always be discussed with your clinical team.