Plympton teenager Jasmine Bayly has welcomed a pioneering new research centre which will bring hope to thousands who, like her, are living with the terrifying uncertainty of a benign brain tumour.
The 15-year-old, whose inoperable tumour was diagnosed two years ago, toured the laboratories where groundbreaking work is taking place and met the scientists dedicated to improving outcomes for patients and, ultimately, finding a cure.
Jasmine and her mother Sandra, 45, of Rhodes Close, were at the launch on Thursday 20 November of a new Brain Tumour Research Centre of Excellence in Plymouth to hear how the work taking place could help those living with low-grade tumours. They were among patients, carers, scientists, clinicians and charities from across the UK who gathered for the launch of the historic new partnership between the charity Brain Tumour Research and the University of Plymouth. Together they have established a new Research Centre of Excellence, bringing a sharp focus on some of the most overlooked forms of brain tumours.
Around 4,300 people are diagnosed with a low-grade brain tumour in the UK each year. Generally referred to as benign, these types of brain tumour, which include meningioma, ependymoma and acoustic neuroma, are graded 1 or 2 on a scale of 4. The lower grade tumours are non-cancerous whereas grades 3 and 4 are cancerous, faster growing and often more immediately life-threatening.
Slower-growing tumours are not immediately cancerous, but they can be just as devastating and bring equally dangerous and debilitating effects to patients and their families. They can cause neurological conditions including loss of balance, weakness, memory loss, poor hearing, epilepsy and personality changes. For many, having a low-grade tumour is like living with a time bomb, wondering when it might suddenly grow more rapidly, become cancerous and spread to other parts of the brain or when the tumour may return after treatment. Sometimes low-grade tumours are located within an inoperable area of the brain.
This uncertainty causes particular problems for Jasmine, whose brain tumour was diagnosed five years after she learned she had the genetic condition Neurofibromatosis 1 (NF1) which has no cure. Depending on its severity, NF1 can cause tumours to grow on the end of nerve sheaths throughout the body and can lead to severe or life-threatening medical problems.
The teenager, a pupil at Heles School in Plympton, has raised thousands of pounds for various charities including Brain Tumour Research. She said:
“Living with a ticking time bomb is not much fun but I want to do whatever I can to help research as I may be needing one of those cures in the years to come.”
Her mum Sandra said:
“Jasmine suffers from high levels of anxiety because of NF1 and needs things in her life to be structured and planned. Of course, there is no structure or plan when you have a brain tumour as we simply do not know what might happen in the future so this is particularly hard. Despite this, Jasmine is extremely resilient and working hard for her GCSE exams next summer.”
The new Centre of Excellence will sit within University of Plymouth and will be led by Professor Oliver Hanemann. Already holding a reputation as a leading facility in Europe looking at low-grade brain tumours, the team will be able to further advance to translational research – taking research from the laboratory bench to drug testing and clinical trials. This will include exploring potential for the repurposing of existing drugs to ‘fast-track’ potential treatments, instead of waiting for new drugs to be developed, tested and trialled and passed for patient use – a process that can take a decade or longer.
By understanding the mechanism that makes brain cells become cancerous in low-grade tumours Professor Hanemann and his research team will explore ways in which to halt or reverse this process. The results from this research will inform investigations into high-grade tumours as high and low grade tumours share some common features. The team will work in collaboration with scientists based at Brain Tumour Research’s network of Centres of Excellence across the UK.
Professor Hanemann said:
“At present the only treatment options for people with such brain tumours is invasive surgery or radiotherapy or facing the prospect of no suitable treatment. By finding and fast-tracking how drugs are tested, we have the potential to make safer, more effective drug therapies available to patients more quickly.”
With secure long-term funding from Brain Tumour Research, Professor Hanemann’s team will be freed from the limitations and frustrations of applying for one specific project grant after another, able instead to pursue the sustainable and continuous research so desperately needed. Generous civic support is already being given across the city, including from the University of Plymouth partners Plymouth Albion RFC, Plymouth Raiders, Devon Junior and Minor Football League and Santander.
Sue Farrington Smith, Chief Executive of Brain Tumour Research, said:
“We are honoured to be in partnership with University of Plymouth. This collaboration will help us in our mission to support people in the fight against this devastating disease. Ultimately, it will lead to better outcomes for patients – from improved awareness for earlier diagnosis, to the development of more effective personalised treatments and targeted drugs. Through the funds generated, we will be able to significantly fast-track progress towards finding a cure for all types of brain tumour.”
Brain Tumour Research currently helps fund – through corporate and public fundraising – an annual £1 million programme of research at their Centre of Excellence at the University of Portsmouth. This relationship with the University of Plymouth, along with additional new partnerships at Queen Mary University, London and Imperial College in London, will pave the way for a £20 million investment in brain tumour research over the next five years.
You can make a difference today by making a £5 donation on your smart phone or tablet. Simply text RSCH06 £5 to 70070 to support this pioneering research. For more information about the partnership with the charity Brain Tumour Research in Plymouth and how you can get involved visit www.plymouth.ac.uk/campaign