About Us

Oscar Hughes

OSCAR’s (Ongoing, Support, Care And Research into) Paediatric Brain Tumour Charity was formed in November 2014 by the parents and friends of Oscar Hughes, a 9 year old boy who died of a Medulloblastoma (a brain tumour) in May 2014.

Oscar was a sporty and energetic 8 year old when he was first diagnosed. His motto was “A day without training is a day without meaning”. As he went through treatment he put all his energy into staying strong for his siblings and friends, as well as fundraising for other children with cancer. In particularly he raised over £6K through a marathon relay in which he himself took part at a time when even walking was a challenge.

The journey Oscar went on for a year to try and be free of cancer was both heartbreaking and inspiring to see. The treatments involved to fight brain tumours have devastating effects on a young body and mind. This is unacceptable and the only way to change this is by researching these cancers and find better treatments.

The charity aims to fund critical research into paediatric brain tumours with the hope to find a cure and less devastating treatments and works closely with other charities.

Research Changes Lives

Where Your Money Goes

Research Changes Lives

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.

PROJECTS WE FUND:

PNET5 clinical trial: transforming treatments for childhood brain tumours

OSCAR’s PBTC is part-funding the PNET5 clinical trial with The Brain Tumour Charity (TBTC) – this is a vital clinical trial studying improved treatments for children diagnosed with medulloblastoma. Medulloblastoma is the most common paediatric brain tumour but treatments are aggressive and can leave long-term, life-altering disabilities for children. It’s a terrible burden for children to bear for the rest of their lives. But, with PNET5, we’re on the verge of a major breakthrough for medulloblastoma treatment.
PNET5 aims to prove that children who are diagnosed with a lower risk medulloblastoma would benefit from less aggressive treatment regimens, and that those with standard risk medulloblastoma could benefit from a different treatment regimen resulting in fewer side effects, without any negative impact on length of survival. Kinder, less aggressive treatments will drastically improve quality of life for these children; reducing the time spent unwell from treatment, reducing time in hospital and, critically, reducing the risk of long-term disabilities.

In order to establish whether a child has a lower or standard risk medulloblastoma, The Brain Tumour Charity has committed to pay for all children diagnosed with a medulloblastoma in the UK to receive biomarker testing. This is the first time biomarker testing will be routine for those diagnosed with a brain tumour and we hope it will prove how valuable it is, with a view that biomarker testing becomes standard across all brain tumour types.

The biomarker tests, developed by Professor Steve Clifford, will identify which subtype of medulloblastoma each child has. Those classified as standard or lower risk will be eligible to join the PNET5 trial and benefit from a more tailored, appropriate treatment level.

Research and clinical trials are expensive. We’re raising money to fund the biomarker testing element of the PNET5 clinical trial and have already allocated £75,000 to this over the next 3 years. The biomarker testing in PNET5 alone costs £2,000 per child. That’s why, whether you can spare £2, £20 or £200, every pound is important to us – it all adds up.

To give you an idea of how your donation to the PNET5 clinical trial could be spent, here’s a breakdown of some of the costs for biomarker testing – a series of tests that allow scientists to accurately diagnosis the type of medulloblastoma each child has:

£10 will pay for an antibody test (to identify how the immune system is responding)
£60 will pay for a genetic test to assess the MYC gene (a gene that plays a role in cell growth, division and change)
£350 will pay for a DNA methylation array (a test) to assess the molecular subgroup of a tumour
£500 will pay for the mutation status of critical medulloblastoma genes to be assessed
£2,000 will pay for a full molecular diagnostic analysis on a single medulloblastoma tumour
Please donate whatever you can to the PNET5 trial today or set up a regular donation to provide ongoing support. Together, we’ll make sure that every child diagnosed with a medulloblastoma has a brighter future.

Marie Hughes, CEO and founder OSCAR’s PBTC: I am so proud that we are able to part-fund the Biomarker testing in the UK part of this European trial. Working with The Brain Tumour Charity gives me confidence that our funds are being put to optimum use. After watching Oscar go through devastating treatment for medulloblastoma and then losing him, it is imperative for me to fund this kind of research, and an honour to be part of changing how other children will go through treatments in the future. Oscar would be so proud of all the work being done in his name.

 

Identification, in-vivo modelling and therapeutic targeting of superenhancer-driven oncogenes in Group 3 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.

OSCARs PBTC part-funds a researcher based at the world-renowned Institute of Cancer Research, who carries out 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 a team from Germany and the USA to study 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.

Tom Daley patron of The Brain Tumour Charity

Marie's Blog

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Everyone with OSCAR’s PBTC is an unpaid volunteer. We happily give our time & energy to organise & run events, to fundraise and in our own time and our own way, spread the word.

We do what we can because we want to make a difference: we don’t want any more kids to go through what Oscar went through. As a new charity we have pledged that as much money as possible from what we raise will go directly to paediatric brain tumour research.

It is our wish to help drive down diagnosis time, increase survival rate and quality of life after treatment.

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