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An important new research programme at Nottingham University’s Children’s Brain Tumour Research Centre is being funded by money raised by the Billie Butterfly campaign.

This exciting initiative is being led by Professor Richard Grundy who has an international reputation for his research on paediatric brain tumours.

Billie died from a very rare type of brain tumour, Diffuse Intrinsic Pontine Glioma. There are only a few cases each year in the UK, most of them children and there is a desperate need for research into the causes and possible treatment of this dreadful disease.  Brain tumours are the biggest cancer killer of children in the UK but research is woefully underfunded.

This important initiative has been made possible by the enormous efforts of the Billie Butterfly Campaign and the thousands of people who donated so generously, raising an amazing £396,000. From the start it was made clear that any money not spent on Billie’s treatment would be used for research. In fact treatment costs accounted for less than a quarter of this sum, enabling this major research programme to be established. Billie’s Trust has approved a grant of £267,000 for the three year programme, retaining a small balance in reserve for any additional costs which emerge from the research.

The research is being set up after detailed discussion with The Brain Tumour Charity and the Children’s Brain Tumour Research Centre. There is a possibility that the funds will be matched by Nottingham University making this an even more significant development.

See Billie’s Research Programme  on this website for more detail and Billie Bainbridge Research Project  for the announcement on The Brain Tumour Charity website.

ABOUT BILLIE: Billie died peacefully at home on the afternoon of Friday 1 June 2012 nearly a year after she was diagnosed with an inoperable brain tumour. She was just 5 years and 5 weeks old. She was an extraordinary little girl. She will always be loved and never forgotten.

Until the beginning of June 2011, Billie Bainbridge was just like any other lively 4 year old little girl, full of life and looking forward to starting school. Then without warning she began to show signs that something was wrong. Within days she was diagnosed with the worst type of brain stem tumour, so dangerous that surgery is impossible. As if this wasn’t bad enough, a few months earlier Billie’s mum Terri was diagnosed with breast cancer. See Billie’s Story for more.

If you would like to donate to research into child brain cancer please click on the Just Giving button on this page or go to This will take you direct to a page raising money for research through The Brain Tumour Charity. You can find out more about the charity’s fight against brain cancer at  The Brain Tumour Charity.

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