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Last modified: 1st February 2017

Brain tumours are the biggest cancer killers in people under the age of 40, a fact many people are unaware of. The five-year survival rate for brain tumours is only 19.8% whereas for other cancers it is 50%. It is a misconception by the government and other organisations that brain tumour research doesn’t need much funding; this is due to the rarity of brain tumours.  However when we lose more young people to brain tumours than to any other cancer, and when brain tumour patients are left with a poor quality of life, this is just not good enough.

But we can change this. Research changes lives. It is that simple. When Oscar got ill, his family got to know many other children with cancer, and in particular with brain tumours. It was a shock to find out how little progress has been made within paediatric brain tumour research compared to how far we have come with other cancers. In April 2016 there was a debate in the House of Commons, initiated after a family member of a brain tumour patient set up a petition to increase funds for brain tumour research. The government had promised a 10-fold increase and during the debate it transpired that, as it started from such a small amount, the current 3.3 million per annum wouldn’t improve outcomes for brain tumour patients for at least 100 years.

We work closely with The Brain Tumour Charity to fund innovative, ground breaking research to ensure future paediatric brain tumour sufferers can get treatments which are as gentle as possible on the body whilst achieving the end goal of cure and high survival rates.

We are currently funding two projects in partnership with The Brain Tumour Charity. One project is looking into administering chemo straight into the brain, hopefully targeting the tumour cells directly without damaging other parts of the body, thereby minimising adverse side effects. The other project is an exciting international and interdisciplinary team approach to medulloblastoma research . More details of this below.

We also support The Brain Tumour Charity’s HeadSmart Campaign by raising awareness of it. This campaign is fundamental to getting early diagnosis time in paediatric brain tumours down. It is shocking that the UK is so far behind many other European countries and the US in diagnosis time – something which can not only save lives but also quality of lives. For more information on HeadSmart please use this link:


Delivering chemotherapy directly to the brain in children with brain tumours.

OSCAR’s PBTC are part-funding this trial with TBTC and Cancer Research UK.

Finding out if chemotherapy drugs can be fed directly into the cerebrospinal fluid that bathes the brain to target tumours in brain membranes in children.

Professor David Walker and colleagues at the University of Nottingham and Birmingham Clinical Trials Unit are testing whether chemotherapy drugs for brain tumours in children can be administered directly to the brain where they are needed.

The researchers are focusing on children with brain tumours who also have leptomeningeal metastases. These children have particularly poor outcomes, surviving on average just 12 – 15 months from diagnosis. Radiotherapy of the brain and spine alongside chemotherapy delivered via the blood stream help in treating this condition, but carry a risk of serious toxic effects, affecting learning, development and growth.

This clinical trial aims to confirm whether etoposide can be safely fed into the cerebro spinal fluid (CSF) directly. Delivering the drug in this way bypasses the blood brain barrier and avoids dosing the rest of the body unnecessarily.

The researchers also want to find out what the best dose is and for how long it should be given. To do this they will increase the dosage and duration and measure the amount of etoposide in the blood and CSF, whilst monitoring the patients and their tumours.

If successful this trial could lead to etoposide and other chemotherapy drugs being routinely delivered via the CSF, treating brain tumours more effectively and sparing children some of the toxic side effects.

The leptomeninges are membranes which surround and protect the brain and spinal cord, enclosing cerebrospinal fluid that provides nutrients and oxygen for the brain. Tumours which has spread to the leptomeninges from somewhere else in the body are called leptomeningeal metastases.

New drug development for medulloblastoma

We have agreed to donate £125,000 over 5 years  towards improving understanding and treatment of the type of childhood brain tumour which took Oscar’s life.

We part-fund a researcher based at the world-renowned  Institute of Cancer Research who will be carrying out important work, as part of an international and interdisciplinary team , led by Professor Louis Chesler.

Medulloblastoma is the most common malignant brain tumour in children and causes 10% of cancer deaths. Large studies of tumour-tissue have identified four subgroups of medulloblastoma in patients, but only children with the two least aggressive subgroups have new treatment options. For those children with aggressive, “Group 3″ tumours, survival is dismal and treatment is devastating.

Professor Chesler is working with researchers based in  Germany and the USA to analyse the genetic make-up of Group 3 medulloblastoma. The team will be analysing the genome in medulloblastoma tumour cells while also working on new ways to test drugs for this tumour type.

If successful, the research could, for the first time, reveal how these tumours are wired. This could mean that new drugs to treat this tumour type are delivered to the clinic within five years.

Please have a look at the current research and clinical trials funded by TBTC on
The Brain Tumour Charity / Current Research

We are always looking at new promising research which may not yet be available in the UK and are with hope following NOAH’s Protocol, a clinical trial for highly malignant tumours of the posterior fossa, which has just opened up at MD. Andersen in Houston. For more information on this, please go to: Noah protocol or Paediatric brain cancer – chemo free clinical trials


Oscar The Scientist

Oscar The Scientist