The Brain Tumour Charity is now the largest funder of research into brain tumours in the world, leading pioneering research projects for new treatments currently funding nearly £37million, and providing support for the many thousands of people diagnosed with a brain tumour in the UK each year.
Now Neil and Angela are launching a new legacy fund in their daughter’s name to help The Brain Tumour Charity fund research into high-grade gliomas, the type of brain tumour that Samantha was diagnosed with.
At 14, Samantha started suffering from deep-seated headaches and vomiting. Later at school she had episodes of memory loss, and despite numerous visits to our GP and a Specialist paediatrician, it took nine months to diagnose her.
After collapsing and being rushed to Southampton hospital, Samantha was scanned and diagnosed with a high-grade glioma which was diffused and classified as Gliomatosis Cerebri – a rare tumour. The prognosis was terminal with a chance that radiotherapy and chemotherapy might give some remission.
For Neil and Angela, their world was turned upside down.
For the next two and a half years, they battled to save her life but despite Samantha’s bravery and some remission from the radiotherapy, she lost her battle on the 31st October 1996, just seven days before her 17th birthday.
Angela said: “Following Samantha’s death, we received £20,000 donations at her funeral to be used for research into brain tumours. When we looked into how to spend the money we were amazed to find there was no dedicated brain tumour charity in this country.
“There was also a total lack of research and support for families and patients with brain tumours. This was despite the fact that brain tumours were the second most common childhood cancer after Leukaemia and killed more people under the age of 40 than any other cancer.”
“We then made the life-changing decision to establish the first dedicated brain tumour charity in the UK which we called The Samantha Dickson Research Trust. The Charity was officially registered in February 1997 with an impressive Board of Trustees and a Scientific and Medical Advisory Board.”
The Charity, originally launched from the couple’s home study in Hampshire, quickly grew and funds started to mount. This enabled Neil and Angela to start funding a substantial research programme at institutes throughout the UK. In 2000, the decision was made to expand the Charity and take on its first paid employee.
Research breakthroughs quickly followed, support increased, and they merged with several other brain tumour charities to finally become The Brain Tumour Charity.
Of the breakthroughs they made along the way, Angela said: “Our award-winning research at The University of Nottingham had identified that the average diagnosis time for children with a brain tumour in the UK was an average of thirteen weeks – much longer than in other countries.
“This then led to our HeadSmart campaign, launched in 2011, which has been a great success reducing the average diagnosis time from thirteen to six and a half weeks, and has since received a number of major awards.
Neil and Angela Dickson received an MBE in December 2014, presented personally by The Queen at Windsor Castle in July 2015.
In September 2020, Angela became an Emeritus Founder Trustee, retiring from the main Trustee Board, but still very much involved with the charity. Neil and Angela decided that this would be an opportune time to set up The Samantha Dickson Fund, a supporter group within The Brain Tumour Charity, making sure Samantha’s name will never be lost.
Angela said: “It also gives us the opportunity to make sure that all the money raised in Samantha’s name will be restricted to high-grade glioma, the tumour type that she had.
“When we started the charity we raised money for research into adult and childhood brain tumours in general. At that stage it was impossible to believe that in our lifetime we could get a new treatment for Samantha’s tumour type.
“Due to the progress made this has now changed and it would be a great tribute to her if we can achieve this over the next five years. If the fund is as successful as our earlier fund-raising, we hope to set up a Paediatric High Grade Glioma Centre in Europe with strategic International links. This would be based on the Charity’s Paediatric Low Grade Glioma Centre in Heidelberg, Germany.
“Samantha had an incredible zest for life. She was a bright, lively, happy, fun-loving girl, who enjoyed school, music, drama, sports, badminton, netball, lacrosse, swimming, ballet, modern & tap dancing, travel and skiing. She played the flute and piano and was a dedicated scholar, working for distinction in all her exams.
“The Samantha Dickson Fund, will make sure that Samantha’s name will never be lost.”
Sarah Lindsell, our CEO said: “Driven by Samantha’s legacy, Neil and Angela’s dedication and the generosity of our supporters, we are so proud of all we’ve been able to achieve together since 1996, including investing over £50 million in world-class research, providing support to millions of families and reducing diagnosis times for children from 13 to 6.5 weeks.
“But there is still so much more to do and we are honoured and so grateful to Neil and Angela to now have a new Fund in Samantha’s name, dedicated to driving much-needed progress for those diagnosed with a high-grade glioma.
“Neil and Angela remain the embodiment of The Charity’s values and our unwavering commitment to defeat brain tumours. Their vision saw The Charity develop from determined origins to become the largest dedicated funder of brain tumour research in the world – and we are really excited that The Samantha Dickson Fund now sees another new beacon of hope for our community. For so many families affected by a high-grade glioma, a cure can’t wait.”
Find out more about The Samantha Dickson Fund