Hello everyone,
In the past week, we had the pleasure of joining Dr Lennard Lee, Associate Professor – Cancer Vaccines at the University of Oxford, for a seminar on cancer vaccine design for brain tumours.
Lennard is also a member of the Brain Tumour Research Scientific and Medical Advisory Board (SMAB).
Held at the Centre for Immuno-Oncology (CIO), the seminar – ‘Research into the neoantigen landscape for cancer vaccines for glioblastoma’ – hosted a number of committed attendees, all eager to hear how scientists are pushing at the forefront of science to understand how the immune system responds to cancer, and how we can strengthen tumour immunity.
The seminar focused on the work of Michael E Bryan to review all 100 design tools currently being used by cancer vaccine manufacturers, and his efforts to analyse brain tumour datasets of 1000 patients to find new targets. 
An interested attendee, who opened the event, was the Chair of our APPG, Dame Siobhain McDonagh (pictured here with Dr Lee).
In her address, Siobhain brought all of the passion that makes her such a vital Chair of the APPG. She spoke of her anger at there being no new treatments for a generation, the lack of deployment of the NIHR £40 million, the misnomer of ‘gold’ standard treatment for brain tumour patients (preferring to call it ‘plastic’), and said her anger began the day her sister collapsed and was soon after diagnosed with a glioblastoma.
She empowered the audience to be less polite and more demanding, and to ‘break down barriers’, because she said the lack of hope for brain tumour patients in the UK is to our ‘eternal shame’.
Clearly Siobhain feels that there is hope coming from the vaccine work being led by Dr Lee in Oxford, however, and we are pleased to be associated with him. 
A new report from the All-Party Parliamentary Group (APPG) on Less Survivable Cancers has issued a stark warning about the critical need for quicker diagnosis of brain, pancreatic, and other deadly cancers, urging immediate Government action.
The report, launched this week, outlines 12 key recommendations to address the shocking five-year survival rate of just 16% across six cancers – brain, liver, lung, pancreatic, oesophageal, and stomach. Together, these account for more than 67,000 deaths annually in the UK.
Brain tumours remain particularly hard to detect early. Vague symptoms such as headaches are often misattributed, and current NHS diagnostic pathways are failing patients – only 0.4% of brain tumours are diagnosed through the Non-Specific Symptoms (NSS) referral route.
But new diagnostic tools offer hope. The Dxcover blood test, for instance, showed 96% accuracy in detecting brain tumours and could reduce mortality by up to 28% with earlier diagnosis. However, experts warn these technologies are being held back by slow regulatory processes.
As Thomas said, having read the report: “Meaningful progress for patients depends on a system that can move more swiftly. We need a smarter, more agile approach to ensure the most promising breakthroughs are reaching patients as soon as possible.”
The APPG report calls for regulatory reform, clearer MRI access for GPs, and investment in genomic profiling and frozen tissue storage for aggressive tumours such as glioblastoma. It also recommends appointing a dedicated Government lead to drive innovation and establish Centres of Excellence to connect researchers and clinicians.
Chair Paulette Hamilton MP urged immediate action: “Late diagnosis costs lives. We are on the brink of transformation – now is the time for the Government to act.”
At Brain Tumour Research, we welcome the report’s focus on removing barriers to innovation and diagnosis.
The report can be read in full here. 
NICE is recruiting two new lay members for its Prioritisation Board, which helps decide which topics should be selected for new health and care guidance. They’re looking for individuals with a broad understanding of what matters to patients, carers, and people who use services. Meetings are held online every two weeks.
For this role, you will receive either £300 for a full day meeting or £150 if it's a half-day meeting, with other expenses payable depending on your situation. The role offers a chance to influence national guidance at the earliest stage.
Apply by Sunday 15th June 2025. Interviews take place on 27th June.
You can find out more and apply on the NICE website recruitment page. For further details, please contact Mark Rasburn at mark.rasburn@nice.org.uk. 
Finally this week, we would like to pay tribute to Ben Lindon, who died last week. A wonderful campaigner and a wonderful man, Ben was known to many of us at Brain Tumour Research.
Ben died 16 years after he was diagnosed with an aggressive oligodendroglioma.
Ben’s tumour was too risky to surgically remove due to being close to his cerebral cortex, which controls motor functions such as movement and speech. Surgery would have put Ben at risk of dying in the operating room or suffering a severe stroke and paralysis. Instead, Ben underwent 120 cycles of radiotherapy, and chemotherapy, thought to be the most chemotherapy given to any patient in the UK.
Ben’s former wife, Kate Lindon of Malvern, with whom he had two children, Martha, 13, and Sid, 11, has vowed to continue Ben’s legacy and is continuing his work with us to raise awareness of the disease that left her son and daughter without a father.
Kate said: “I watched a brain tumour take away the father of my children, Ben was a healthy, athletic, energetic man. Seeing his slow decline was heartbreaking. Ben fought a brave battle, raising awareness and support by raising more than £10,000 for Brain Tumour Research. Ben wanted others to have a fighting chance, and he knew that fundraising was his way of trying to ensure that other families don’t have to experience what he went through.
“Ben was diagnosed with a brain tumour at just 29. He made a powerful and immediate decision to fight not just for his own health, but for the wider cause of Brain Tumour Research. Instead of allowing the diagnosis to define or defeat him, Ben chose to lead a healthier life, physically and mentally, and to focus on others who were also suffering. He began running and training, not only to rebuild his strength but to reclaim the activity that had first revealed his illness. Fundraising became a form of therapy and purpose, culminating in Ben completing the Brighton Marathon in 2011.”
From the Three Peaks Challenge to the London Marathon, and even a 1,000-mile bike ride from John O’Groats to Land’s End, Ben used each feat as both a personal milestone and a public statement.
In 2017, during Ben’s 100th chemotherapy cycle, he kayaked 100 miles along the River Wye, surrounded by mementos from his children. Ben not only became a tireless fundraiser but also a passionate advocate, helping present a landmark report to Parliament on the cost of brain tumours, both personal and financial.
Ben’s story is one of turning adversity into activism, using every step, stroke and summit to shine a light on a cause that was close to his heart.
Hugh spent a day with Ben back in 2017 and he made a short film of that day as a way for Ben to share the importance of legacy giving. You can watch that film by clicking below and it is shared as a tribute to a remarkable man.
Ben Lindon 19.03.1979 – 28.05.2025 
That’s it for this week’s campaigning update; we will be back next Friday.
Wishing you all a peaceful time until then.
Karen, Hugh and Thomas
