Brain Tumour Awareness Month is now well underway with a poignant Minute's Silence on Monday, following the powerful #ShineALight campaign that illuminated last Saturday night.
At the Minute's Silence, we heard from team members and campaigners, some expressing, and all remembering, why they support Brain Tumour Research and the importance of being a part of our community. 
A great champion for Brain Tumour Research, Foysol Choudhury MSP, pictured with Thomas, has tabled a parliamentary motion in the Scottish Parliament, recognising March 2025 as Brain Tumour Awareness Month, emphasising the commitment of Scottish Parliamentarians to raising awareness and improving research.
A Parliamentary Motion is a short proposal that allows MSPs to indicate their support of a particular cause.
The motion, which can be read here, recognises the launch of the Scottish Brain Tumour Research Centre of Excellence as a major milestone in Scotland’s fight against brain tumours. This cutting-edge facility, a collaboration between the University of Glasgow and the University of Edinburgh, focuses on accelerating research into glioblastoma, one of the most aggressive and difficult-to-treat brain tumours. Scientists at the Centre are working on groundbreaking treatments to improve survival rates and quality of life for patients.
The motion also acknowledges the crucial role of charities such as Brain Tumour Research and Beatson Cancer Charity, both of which have been instrumental in funding research and supporting patients across Scotland.
If you live in Scotland, please get in touch with your MSP and encourage them to add their name in support of the motion. Contact information can be found here.
The Rare Cancers Bill, a Private Member's Bill brought forward by Scott Arthur and mentioned many times in these updates, will take place next week in the House of Commons – on Friday 14ᵗʰ March – and we need you to contact your MP and ask for their support in attending and casting their vote.
If passed, the Rare Cancers Bill will:
1. Provide greater accountability, facilitating collaboration and long-term coordination for the UK’s research landscape
2. Allow improvements to regulations to support the development of treatments for rare and less common cancer treatments
3. Enable more clinical trials to take place in the UK – leading to real outcomes for patients
Brain Tumour Research played a key role in the development of this Bill, helping shape it into a proposal that could drive tangible change for patients across the UK.
Now is the time to turn support into action and ensure this vital legislation becomes law. For the Rare Cancers Bill to move forward, it needs at least 100 MPs to vote "yes" – and that’s where you come in. Every MP counts and your voice can make the difference.
You can write to your MP, asking them to attend, using this quick-and-easy template. The more MPs we get on board, the closer we come to real change for those affected by brain tumours.
Watch Scott talk about the Bill, thanking Brain Tumour Research for our support in this video.
If you have experience of a brain tumour diagnosis made before the age of 25, then our friends at the Success Charity offer a growing range of support services, including their ‘unfocused group’ where survivors find community, through to their more formal support services, such as peer mentoring and their conferences and roadshows. Their annual conference will once again take place at 1 Wimpole Street (The Royal Society of Medicine building) on Saturday 15ᵗʰ March.
The conference will have something for everyone including survivors, medical and educational professionals and families/carers.
It’s a fantastic opportunity to share your story, lobby for change, chat with leading clinicians and make new friends.
This week we attended an 'Inclusivity in Clinical Trials' conference hosted by The Association of the British Pharmaceutical Industry (ABPI) and AMRC which had the working title: 'Making Clinical Trials Work for Everyone'.
If we don’t have diverse clinical trials, we won’t have safe and effective treatments for everyone and, at the conference, key voices reinforced the urgent need to rethink how we design and deliver clinical trials to ensure they work for everyone. Here are quotes from some of the speakers which give a good idea of the mood at the conference:
“We’re not where we need to be. Inclusivity must be front and centre for patients. By using technology and AI, we can speed up the processes, increase diversity and create medicines that work for everyone.”
“We need to co-produce clinical trial materials with patients because co-production leads to trust.”
Other delegates emphasised the importance of feedback loops, managing expectations of clinical trials and improving engagement. An acknowledgement was made that ensuring payment for travel or missed work was significantly more important in motivating clinical trial participation for ethnic minority adults in the UK, across all income levels.
It was agreed that clear communication about the logistics of clinical trials, and remuneration and support for participants are vitally important (e.g. when and how participants will be paid).
In the UK we are looking for opportunities to lead in clinical trials but only if we can ensure they are truly inclusive, transparent and patient-focused.
It’s time to act, and of real relevance. Here is this blog from the ABPI which we recommend reading.
Brain tumours are a series of rare diseases and, at a meeting this week, we joined other brain cancer charities to look at the difficulties posed by low-grade gliomas (LGGs).
It would not be appropriate to report in any detail on what was discussed at the meeting but what is important is that at Brain Tumour Research our vision is, and will always be, to a find cure for all types of brain tumours.
Although it can seem the focus of research and campaigning interest is paediatric and adult high-grade tumours, we will always seek opportunities to take things forward in the research of other tumour types and grades because these patients need the improvement in options and outcomes just as desperately, and the unique challenges these other tumour types pose must be recognised, challenged and overcome.
Please don't forget that we have Wear A Hat Day on the horizon.
We are back next Friday – wishing you all a peaceful time until then.
Karen, Hugh and Thomas