Why We Exist

Edie’s Butterfly Appeal was set up in July 2014 to raise much needed research funds for ependymoma brain tumours.
Currently just 1% of the national cancer research spend is allocated to all brain tumours and treatments lag seriously behind other cancers. Less than 20% of those diagnosed with a brain tumour survive beyond five years, compared with a 50% average for all cancers.

Although research into ependymoma is being carried out by the Children’s Brain Tumour Research Centre in Nottingham, much more is needed to discover its cause and to understand its behaviour.

  • Brain tumours kill more children than leukaemia or any other form of cancer
  • Brain tumours receive less than 1% of the UK national spend on cancer research
  • Two thirds (67%) of brain tumour survivors are left with life changing, long term disability as a result of treatment
  • Every year 280 children are diagnosed with ependymoma
  • Three in every 10 children diagnosed will die within five years of diagnosis
  • Due to advances in medical knowledge, UK cancer survival rates have doubled in the past 40 years. Brain tumour survival rates have not changed in 40 years
  • Brain tumour research is expensive – but just £50 can help a researcher test new potential brain tumour treatments in the lab by purchasing petri dishes and flasks to grow brain tumour cells