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A new public petition highlights the devastating impact of DIPG

A diffuse intrinsic pontine glioma (DIPG) diagnosis can be one of the most difficult things for a parent to hear and it can leave many families feeling helpless, powerless and desperately frustrated with the devastating prognosis

BIOMEDE is a type of high grade (aggressive) brain tumour that forms in a part of the brainstem known as the pons. DIPG affects around 20 to 30 children in the UK every year, and has a five-year survival rate of less than 1%. There are no effective treatment options.

The reason DIPG tumours are incredibly challenging to treat is because they can’t be operated on due to their location within the brainstem, a crucial part of the brain that controls vital functions, including breathing.

The cause of DIPG, is not yet known. All of this can present affected families with an impossible situation, and very few realistic offerings of hope.

Our investment

Therefore, we believe it is absolutely paramount that greater research into DIPG is conducted now, and with a sense of urgency, because we know a cure can’t wait.

Our £3.2m funded INSTINCT programme brings together experts from Newcastle University, the Institute of Cancer Research and the UCL Institute for Child Health to research high-risk childhood brain tumours, including DIPG.

The specific DIPG programme of work is being led by Dr Chris Jones at the Institute of Cancer Research. Dr Jones has extensive experience in understanding the genetic basis of DIPG and what is driving tumour growth.

It is hoped that this research programme will greatly enhance our understanding of these aggressive tumours and that this new understanding can be rapidly translated into new and effective treatments.

Our research

The development of new and effective treatments is crucial in order to tackle DIPG , and we’re funding research into this area too. BIOMEDE is a European clinical trial led by Dr Darren Hargrave and his team at Great Ormond Street Hospital, and is co-funded by The Brain Tumour Charity and Cancer Research UK.

The trial is testing three new drugs with the aim of improving survival and quality of life for children affected by DIPG brain tumours. Dr Hargrave’s team will test samples from 150 children with DIPG over five years and will select the best drug to test on each individual tumour based on molecular characteristics.

In each case researchers will assess whether each drug is safe, and effective, when combined with radiotherapy. This example of tumour specific drug testing is designed to make the prospect of effective treatments for DIPG a more imminent possibility.

Further to this, we are funding research at the Structural Genomics Consortium (SGC) in Oxford to develop a drug for one of the changes seen in DIPG – a discovery made by Dr Chris Jones. We believe that every patient should have the opportunity to participate in clinical trials that are underpinned by clear ethical guidelines.

To increase the number of clinical trials available we increased our investment into translational research and early-phase clinical trials as part of our five year research strategy, A Cure Can’t Wait.

A global leader

Furthermore, it is absolutely vital for the UK to be a global leader in research into brain tumours and to foster the best possible international collaboration to facilitate scientific breakthroughs

In the immediate term we are looking forward to the upcoming report of the Department of Health’s Task and Finish Working Group which will provide recommendations on how to break down barriers to research into brain tumours; we know this area that has suffered from chronic under investment and neglect for far too long.

We’re proud to be playing a leading role as the largest dedicated brain tumour charity in the world, funding research, raising awareness and providing support services for those specifically affected by brain tumours.

The petition

The parents of 7-year-old Kaleigh Lau know all too well the utter devastation caused by a DIPG diagnosis, and have established a petition to raise awareness of this atrocious condition.

The petition has so far gathered over 10,000 signatures meaning the UK Government is required to formally respond.

Should the petition reach 100,000 signatures it will be considered for debate in the UK Parliament.