Yesterday, brain tumour patients and families impacted by the devastating disease joined representatives of the Charity at Holyrood for a meeting of the Scottish Parliament Cross-Party Group on Brain Tumours (CPGBT). Brain Tumour Research holds the secretariat for the CPGBT which means we take an active role in its work. We coordinate meetings and bring together stakeholders such as government ministers, researchers and government bodies and ensure that the focus is to drive change and better outcomes for our patients north of the border.
Attendees, including our Patron Theo Burrell (pictured above centre), a glioblastoma patient, heard about the latest clinical innovations in the field and about inequitable access to whole genomic sequencing (WGS) in Scotland.
WGS of brain tumour tissue reveals powerful information about the underlying biology driving tumour growth and helps to inform what drugs could be used to target specific cancer-causing pathways. This information unlocks access to clinical trials based on cancer biology rather than location in the body.
"Being diagnosed with a brain tumour is devastating enough, without finding out that patients in Scotland are being left behind in the hunt for new treatments due to a lack of routine testing. I am working with Brain Tumour Research to make it clear to the Scottish Government that 100% of brain tumour patients should be offered genome sequencing. The technology is there - let’s use it to stop this injustice," said Theo.
Katherine Dew, our Policy and Public Affairs Manager, said: "What is really important for our community is that we all look forward to the Scottish Elections in May 2026, and how Brain Tumour Research can continue to engage, lobby and encourage the Scottish Parliament, notably the Secretary of Health, that Scotland not only rolls out genomic testing, but also commits to hearing more lived experience in this field."
Earlier in the day, representatives from Brain Cancer Justice also held an event at the University of Edinburgh to share their work with the brain tumour community. We are working to understand their priorities, plan of action and in what areas we can work together to enact change for patients.
Meanwhile, supporters, including Nadia Majid, who was also at the CPG yesterday and lost her four-year-old son Rayhan (pictured top left and above with mum Nadia and dad Sarfraz) to a medulloblastoma, visited our Scottish Centre of Excellence. They learned first-hand from the scientists about progress being made to find a cure for all brain tumours, changing the story for brain tumour patients.
Nadia said: “It shouldn’t be left to charities to fund research. We can’t allow Scottish families to be left behind in the search for more effective, kinder treatments and ultimately a cure.”
Nadia is one of our supporters sharing their stories in support of our Christmas Appeal. To read more stories and donate to support vital research into brain tumours, click here.
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