The Brain Tumour Charity – a cure can’t wait!

The Brain Tumour Charity is the world’s leading brain tumour charity and the largest dedicated funder of research into brain tumours globally.

 

CommunityAd Exclusive - The Brain Tumour Charity - a cure can't wait!The charity was tragically born out of devastation when founders Neil and Angela Dickson’s world was turned upside down when their daughter Samantha was diagnosed with a rare brain tumour at just 14 years of age.

Despite numerous visits to their GP and a Specialist Paediatrician, it took nine months to diagnose Samantha and for two and a half years, Angela and Neil battled to save her life but she sadly lost her battle on 31st October 1996, just seven days before her 17th birthday.

After receiving donations at Samantha’s funeral to be used for research into brain tumours, both Angela and Neil were amazed to find there was no dedicated brain tumour charity in this country, even though brain tumours were the second most common childhood cancer after Leukaemia.

The charity was then launched from the study of the Dickson’s home which has seen significant progression and development into the research of brain tumours. Neil and Angela received an MBE in December 2014, presented personally by The Queen at Windsor Castle in July 2015. In 2020, The Brain Tumour Trust set up The Samantha Dickson Fund, a supporter group within The Brain Tumour Charity, making sure Samantha’s name will never be lost.

At the 2024 New Year Honours list, Angela and Neil Dickson received their OBE Awards for services to the brain tumour community and they both spoke to us to tell us more about the incredible work they have done and are continuing to do moving further and faster to help every single person affected by a brain tumour.

 

What are the overall aims and ambitions that you want to achieve with The Brain Tumour Charity?

When we first started the charity there was no dedicated brain tumour charity in the UK. We set this up to provide support for patients and to increase research into the disease.

 

Can you tell us more about your HeadSmart Campaign?

HeadSmart was an award-winning campaign that helped reduce the average diagnosis time for childhood brain tumours by 50% in the UK. We were motivated to fund the original research as it had taken 9 months to diagnose Samantha and we received numerous calls from parents concerned about late diagnosis.

 

What would you say have been the charity’s proudest moments through its history?

Excluding HeadSmart the proudest moments in history are.

Our research at Cambridge University was the first in the world to discover a genetic mutation in childhood glioma. This has since led to new drug treatments for this tumour type.

Our research at Newcastle University discovered a low and high-grade form of medulloblastoma which has now led to a classification of four different grades of the tumour. We are funding the UK arm of European trials which gives less aggressive treatment for the low-grade variant and more intense treatment for the high-grade type.

We led the successful merger with Brain Tumour UK and the Joseph Foote Foundation in 2012. This increased annual income to over £5m a year and prevented duplication in research and patient support.

In 2024 we fund high-quality international research and are one of the largest funders in the world

We have united the brain tumour community in the UK in the fight against this devastating disease.

 

It is so disheartening reading your story and knowing you had to go through that awful uncertainty of delayed diagnosis and even wrong diagnosis with Samantha. Would you say that if The Brain Tumour Charity was around then the outcome would possibly be different?

If TBTC had been around when Sam was diagnosed we certainly would have received much better support as we fought the disease. From a research perspective, it is also very significant that a new drug combination is now available which could treat Samantha’s rare diffuse tumour.

 

Can you explain just how emotional the journey has been from starting up the charity from your study at home in 1996 to moving to multiple premises and establishing yourselves as the largest dedicated brain tumour charity in the UK?

Receiving the OBEs was an emotional experience as it brought into focus this amazing 27-year journey. We would rather not be part of that journey if we could have Sam back, but we have met some amazing people on this journey and this award should be shared with all the people that have supported us.

 

How proud do you think Samantha would be of the incredible work you have both done?

Samantha would have been immensely proud, especially from the fact that other children had benefited from her legacy.

 

Do you have future goals of what you would like to achieve with The Brain Tumour Charity over the next 20-30 years?

We have made great progress but we still have a mountain to climb. We expect the charity to continue with a 10% growth pattern raising additional income. We need to translate more scientific breakthroughs into new clinical treatments. At the same time, it is essential that all brain tumour patients must be offered a place on a clinical trial.

 

If you would like to potentially volunteer at The Brain Tumour Charity, go online and visit www.thebraintumourcharity.org/get-involved and to donate visit www.thebraintumourcharity.org/get-involved/donate/why-choose-us/impact-your-money-makes

To donate towards The Samantha Dickson Fund, visit www.thebraintumourcharity.org/get-involved/our-supporter-groups/supporter-groups/groups/the-samantha-dickson-fund

www.thebraintumourcharity.org

Exclusives by Area

Search