How The Brain Tumour Charity started

In 1996, Neil and Angela Dickson lost their 16-year-old daughter to a brain tumour and established The Samantha Dickson Brain Tumour Trust in her honour. A year later, the United Kingdom Brain Tumour Society was founded. And, in 2001, the Joseph Foote Trust was set up.

These three charities operated autonomously, though there was some collaboration. In 2001, The Samantha Dickson Brain Tumour Trust co-funded a three-year research programme with United Kingdom Brain Tumour Society, which changed its name to Brain Tumour UK in 2004.

In 2010 the Joseph Foote Trust merged with Brain Tumour UK. Then in 2013, Brain Tumour UK merged with the Samantha Dickson Brain Tumour Trust and became The Brain Tumour Charity. By merging, the charities were able to combine resources and efforts, and begin to grow as one under a name that described what the organisation did.

The Brain Tumour Charity 2013-2020: United and growing together

In 2013, we reached the milestone of 100 supporter groups. We also held the first Twilight Walk, which went on to become our flagship fundraising and awareness-raising community event.

In 2014 our collaboration with The Lewis Moody Foundation was launched. This was also the year that we launched our research strategy: A Cure Can’t Wait.

In 2015 we launched our five-year strategy Defeating Brain Tumours: 2015-2020, which aimed to double the survival and halve the harm caused by brain tumours. We also started our HeadSmart campaign, initiated by the Samantha Dickson Trust, which was included in the five year cancer strategy for England.

Along with this, we published Losing Myself: The Reality of Life with a Brain Tumour, the largest and most in-depth study to date into day-to-day life with a brain tumour. And, our founders, Neil and Angela Dickson, were awarded MBEs.

Between 2016 and 2020 we continued working hard to drive change, and we saw some promising results. Our HeadSmart campaign helped reduce childhood brain tumour diagnosis times from 13 to 6.5 weeks. We also awarded our biggest grant to date – £5m – to the Everest Centre for Research into Paediatric Low Grade Brain Tumours.

We worked with Baroness Tessa Jowell to ensure a commitment that 5-ALA, or ‘the pink drink’, would be used nationally to help surgeons remove brain tumours. We also gave £2.8m to help found the Tessa Jowell BRAIN MATRIX, an adaptive research environment designed to provide infrastructure for future clinical trials. And, in 2020, the Tessa Jowell Centres of Excellence initiative was launched, which recognises UK medical centres that offer exceptional brain tumour treatment.

We also merged with Meningioma UK in 2020, allowing us to work more efficiently on supporting those affected by a meningioma brain tumour.

2021 to date: Accelerating towards cures for brain tumours

In 2021 we launched our new strategy, Accelerating a Cure: 2022-2027. This focused on creating new knowledge, accelerating new treatments, and enhancing quality of life. And, we were off to a good start!

In 2022, we reached the income milestone of £100m since The Charity was founded – helped largely by raising £11.5m that year, our best year to date. This was also the year that we launched our Better Safe Than Tumour campaign, created to raise awareness of the signs and symptoms of brain tumours in adults and children. It has since been used by more than 100,000 people.

With the brain tumour community at the heart of everything we do, we were proud to launch our new community-created strategy, Living Longer and Better in 2023. We also established a free counselling service for anyone affected by a brain tumour and launched our Paediatric Improving Brain Tumour Care surveys, which helped lead to six centres receiving Tessa Jowell Centres of Excellence for Children accreditation. This was another record year of fundraising, with our income reaching £12.7m.

In 2024, we hit new heights thanks to the generosity of our supporters – raising £14m. We also launched our campaign for a National Brain Tumour Strategy and delivered an open letter to Government that had been signed by more than 52,000 people within a few weeks. And, thanks to research we funded, and our involvement in the appraisal process, the National Institute for Health and Care Excellence (NICE) approved dabrafenib and trametinib to treat childhood gliomas. 

We also invited applications for our first ever Translational Award, which will provide funding of up to £2.2m to support the early-phase development of potential new diagnostics, drugs or devices – overcoming the substantial hurdles of getting promising laboratory work to the next stage of the research pipeline.