Tag: The Brain Tumour Charity

Charity welcomes Scotland’s approval of treatment on the NHS for children with rare brain tumours

Children in Scotland diagnosed with a brain tumour that has a specific genetic mutation can now be treated on the NHS with a kinder, more effective targeted therapy. 

The Scottish Medicines Consortium has today approved prescribing dabrafenib to treat children aged one and above who have been diagnosed with a low- or high-grade glioma that has the BRAF V600E mutation: https://scottishmedicines.org.uk/medicines-advice/dabrafenib-finlee-full-smc2667/

It’s used in combination with another medicine, trametinib, and both can be administered at home as they are taken orally. This means fewer hospital visits. 

The news follows the approval given in April this year by the National Institute for Health and Care Excellence (NICE). 

Current standard treatment for the condition typically involves surgery – where that’s possible – chemotherapy and/or radiotherapy. But less than 30% of children diagnosed with high-grade gliomas survive for five years or more and the treatment often has brutal side effects.  

Outcomes for low grade gliomas – the most common childhood brain tumour – are better at a 90% survival rate following surgery. But chemotherapy may also be prescribed whereas this treatment means improved quality of life for patients as clinical trials showed its side effects were rare.  

The combination medication is the first targeted treatment to be made available on the NHS for paediatric gliomas. It is already licensed for use in the USA, and for use in the UK in adults with the BRAF mutation who have some types of lung and skin cancers. 

The two drugs work together to block the growth signal coming from the mutant BRAF protein, slowing or even stopping the tumour from growing.  

Brain tumours affect around 500 children a year in the UK, of whom between 150 to 175 may have a glioma and fewer still will have the BRAF mutation. But despite the small numbers involved, this is the first progress made in treating the disease in years. 

In 2008, research carried out by Dr David Jones which was funded by The Brain Tumour Charity (then known as the Samantha Dickson Brain Tumour Trust), identified a BRAF mutation that was common in pilocytic astrocytoma brain tumours. 

This was the first time that a specific genetic change had been detected in these tumour types and it paved the way for drug development as it could then become a target for diagnostic tests, changing the research landscape for low grade brain tumours in children. 

Dr Jones now leads the EVEREST Centre in Germany, which carries out research into paediatric low grade brain tumours. 

Dr Michele Afif, Chief Executive at The Brain Tumour Charity, said: “We are delighted that the Scottish Medicines Consortium has joined NICE in approving the first new treatment for paediatric brain tumours in decades.

“We hope that this will be the first of many new treatments that will ensure our community can live longer and better lives.” 

To find out more about The Brain Tumour Charity, visit:

www.thebraintumourcharity.org/]www.thebraintumourcharity.org/ 

Comedy legends raise over £28,000 at Underbelly’s Big Brain Tumour Benefit

Sixth annual Big Brain Tumour Benefit brings the total amount raised for The Brain Tumour Charity to over £138,000

Comedy stars Dara Ó Briain, Milton Jones, Rose Matafeo, Angela Barnes, Ian Smith, Carl Donnelly, Kanan Gill, Amy Gledhill, Takashi Wakasugi and James Roque came together last night (Tuesday 13th August) in support of a special charity benefit at McEwan Hall.

The one-night-only show returned for its sixth year to raise money for The Brain Tumour Charity – the world’s leading brain tumour charity and the largest dedicated funder of research into brain tumours globally. 

It has been announced today {Wednesday 14th Aug] that the 2024 Underbelly Big Brain Tumour Benefit has raised almost £15,000.  (UPDATE -Thursday 15th: That total has risen to £28,000!) All the money raised will go to The Brain Tumour Charity – a cause which is very close to Underbelly’s heart. The annual show was inspired by seven-year-old Alfie Bartlam, son of Underbelly Director Ed and his wife Lucinda, who died of a brain tumour in 2019.

100% of the ticket income goes straight to The Brain Tumour Charity. This and an additional £1,541 in donations brought the total raised on the night to £14,428.

Ed Bartlam, Underbelly’s co-founder, said: “A huge thank you to the amazing performers from last night, to the incredible audience members, and to everyone who contributed through our JustGiving page. Your support means so much to us. 

“Underbelly is so proud to have raised £14,428 from last night’s show, with all box office income going directly to The Brain Tumour Charity and our specific fund to support an incredibly exciting paediatric brain tumour research and treatment project. Our goal is to raise £1.5 million by 2025 for this project.

“We’re doing this through a range of fundraising events and this annual Fringe show is an important part of that.”

Hannah Bowler, Corporate Partnership Manager at The Brain Tumour Charity, said: “We are so proud to partner with Underbelly for the 6th Big Brain Tumour Benefit and are grateful for their continued support and loyalty.

“The event is a much-loved part of the fringe, and it is wonderful to see the support received from the comedians, audience members and the brilliant Underbelly team.  

“Partnerships like these are so important in helping us raise vital funds for research and awareness of the devastating impact of a brain tumour. Brain tumours are the biggest cancer killer of children and adults under 40 and they reduce life expectancy by 27 years, the highest of any cancer and this must change.

“The Brain Tumour Charity is committed to fighting brain tumours on all fronts with a goal of doubling survival rates and halving the harm that brain tumours have on the quality of life – and it is only through the support from so many people like Ed, Charlie and the brilliant Underbelly team that we can strive towards those goals.

“It’s fantastic that the Big Brain Tumour Benefit has returned this year and has been able to raise £14,428. Thank you all for your incredible support.”

Research into brain tumours is severely underfunded in the UK and yet represents the biggest cancer killer for under 40s. 

Around 500 children and young people in the UK are diagnosed each year but diagnosis times of childhood brain tumours are longer in the UK than in many other countries.

To further support the Brain Tumour Charity, please visit its Better Safe Than Tumour campaign, which aims to raise awareness of the early signs and symptoms of a brain tumour to improve early diagnosis times. 

Anyone who would like to contribute to this important cause, please visit: https://www.justgiving.com/page/underbellysbigbraintumourbenefit2024

Underbelly’s Big Brain Tumour Benefit is a one-night-only show. For more information on the wider programme for the remainder of the Edinburgh Festival Fringe, please visit the website here. 

Million pound milestone in Emily’s memory

A family which has raised more than a million pounds to fund a research project into the most aggressive type of brain tumour has unveiled a plaque at the University of Edinburgh laboratory where the work takes place. 

The Emily Morris Fund, set up in memory of a woman from London who died from a brain tumour aged just 31, was established in 2017 in collaboration with The Brain Tumour Charity. 

Emily’s father, Jack Morris, then became Chair of Trustees at the organisation.

Now he and his family have seen for themselves how their fundraising is helping to screen thousands of drugs to see if any have the potential to treat glioblastoma. 

The project is co-funded by Cancer Research UK and is believed to be the largest of its kind in the world: an unbiased screening of drugs in human glioblastoma cell models. 

Emily first became unwell with headaches and what doctors thought was a flu virus in 2015 when she was 29. 

Then her heart rate rocketed for no apparent reason and a cardiac specialist prescribed her medication but couldn’t find the underlying cause. 

When she began to experience a strange smell and taste up to 20 times a day, she was referred to an ear, nose and throat specialist who sent Emily for an MRI scan.  

Expecting nothing out of the ordinary, Emily went to find out the results on her own and was shocked when a consultant told her she had a brain tumour and needed urgent surgery. 

That craniotomy removed much of the tumour and confirmed it was a glioblastoma multiforme, one of the most aggressive and difficult to treat brain cancers. 

Emily’s treatment included 30 sessions of radiotherapy and nine rounds of chemotherapy, but the tumour returned. 

Emily’s father Jack said: “Emily had six months after her initial treatment where she did pretty well. Following that it was then a process of, as I used to say, trying hold back a tsunami.” 

In November/December 2016 Emily’s oncologist said she was fighting an uphill battle, and her family agreed that she should come home. 

Jack continued: “I had a moment that I’ll treasure for the rest of my life with Emily before she died. I was just sitting with her and at this time she couldn’t speak and I did a little wave and said ‘I love you’ and she just said to me ‘love you’. I don’t know how she found the words but they were the last words she ever said to me.” 

Emily died on 3 January 2017 and as she had been such a colourful character who loved jewellery, her mum Susan started making bracelets to sell in her memory. 

Friends and family far and wide organised marathons, bike rides and numerous other challenge events to raise money in Emily’s memory. Her family used these proceeds to set up The Emily Morris Fund and sought advice from The Brain Tumour Charity.  

The Charity told them about Professor Neil Carragher’s research at the University of Edinburgh and they were “absolutely blown away” by his efforts to find treatments for glioblastoma and decided to support it.  

Jack said: “Funding research through The Brain Tumour Charity, wherever it needs to be in the world, by the best practitioners, by the best institutions, is the lifeblood of finding a cure for this awful disease.” 

Emily’s brother, Bobby, added: “We will always keep Emily’s memory alive because we talk about her a lot.

“Whenever we’re at a family dinner or a birthday, we’ll always do a little toast to her and just make sure that she’s remembered … Our family will always be a family of five people, we’re not a family of four.” 

You can find out more about Professor Carragher’s research here:

https://www.thebraintumourcharity.org/news/research-news/finding-new-drugs-for-treating-glioblastoma/ 

And read Emily’s full story here: https://www.thebraintumourcharity.org/emily-morris-fund/ 

Experts discuss ways to improve brain tumour diagnosis in Scotland

A Glasgow-based company which is developing a diagnostic tool to detect brain tumours is one of the organisations taking part in roundtable discussions today – 5 February – to review the brain tumour diagnosis pathway in Scotland. 

GPs, NHS representatives, researchers, representatives from the Chief Scientist’s Office, the Scottish Steering Committee and The Brain Tumour Charity – representing the patient voice – are also taking part in the meeting at The Royal College of Physicians in Edinburgh.  

More than 1,000 people in Scotland are diagnosed with a brain or central nervous system tumour each year1 so there is an urgent need to prioritise better care. In addition, The Charity’s Improving Brain Tumour Care surveys show one in three people visit their GP more than five times before they are diagnosed.  

Now Dxcover Limited is working alongside researchers at the University of Edinburgh to develop a blood test and AI algorithms that could enable earlier diagnosis in primary care settings by analysing blood samples to look for signs of a brain tumour. Early research suggests that this technology could offer a promising diagnostic tool, although more testing is required.

Dxcover
Dxcover1

Cameron Miller, Director of Policy and Strategy at The Brain Tumour Charity said: “This roundtable is a stepping stone to ensure that the right conversations are taking place while these diagnostic tools are being developed.

“When they are ready for patients, we want to ensure that they can access them as quickly as possible. It is also key to ensuring policymakers truly understand the barriers to brain tumour diagnosis and the need to improve current diagnostic pathways.” 

Brain tumours can be hard to diagnose due to their non-specific symptoms, including headaches, vomiting and visual disturbances. An early diagnostic test to help identify which people with these symptoms are most likely to have a brain tumour would help prioritise demand on imaging facilities such as MRI and CT scans.  

Dxcover is currently running a performance evaluation study across seven sites in the UK and Europe, to understand the effectiveness and viability of their technology.  

Prof. Matthew J. Baker, CEO of Dxcover said: “Dxcover has patients at the heart of its thinking. This roundtable is key to changing the picture for brain tumour patients and one which we are excited to be a part of.  

“We have recently launched our EMBRACE study – a pan-Europe 2,200 patient performance evaluation of the Dxcover® brain cancer liquid biopsy which will enable CE marking and provide a much-needed tool for patients.” 

Dr Paul Brennan, Reader and Honorary Consultant Neurosurgeon at the University of Edinburgh said: “During several clinical studies involving patients in Scotland we have demonstrated that the Dxcover test is an efficient and effective strategy for brain tumour detection. 

“The next step is to find the best route to implement this test into routine care and this roundtable brings together the stakeholders needed to achieve that.” 

To find out more about The Brain Tumour Charity’s work with policymakers and healthcare professionals, visit thebraintumourcharity.org