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If only brain tumour research could be funded in the same way as leukaemia and other cancers

10th Anniversary of the APPG on brain tumours

John BercowTen years ago today, on 11th July 2005, founding member charity Ali’s Dream established the brain tumour All Party Parliamentary Group (APPG) with John Bercow MP for Buckingham, and now Speaker of the House of Commons and Brain Tumour Research patron.

On New Year’s Eve 1999/2000, our Chief Executive, Sue Farrington Smith, celebrated the turn of the century with her family including her sister Julie Phelan and her little girl Alison.  In August 2000 their lives changed for ever when Ali was diagnosed with a brain tumour. They lost her just 10 months later in June 2001, three weeks before her eighth birthday.

Back then there was:

Less than 10 brain tumour charities
Raising less than £0.5m between them
Very little brain tumour research
No representation
Low awareness – scant coverage of brain tumours in the media
National (NCRI) spend on brain tumour research less than £1m on brain tumours (0.3%)
Minimum activity in Parliament – no debates, no oral questions, just two written questions

Now we have a thriving APPG:

Over 120 supportive MPs, providing a listening ear and opening doors
Parliamentary events empowering scientists, clinicians, patients, their families and charities
– Ministers called to account, meetings have included: Medical Research Council, NICE, Minister for Universities and Science, Public Health Minister and Shadow Secretary of State for Health
– Parliamentary Questions
– Adjournment and Backbench debates
– Government seems more accessible
– MPs visiting our research centres
– Reports and manifestos
– Greater awareness – over 2,000 pieces of media coverage a year including TV
– Larger cancer charities taking notice
– NCRI spend now over £6m… still just 1%
– 75 brain tumour charities raising over £12m, providing information, supporting families and funding research

There have been big steps forward:

– Improving Outcomes Guidance
– NCRI approve Temazolomide and Carmustine wafers
– Headsmart Campaign
– New technologies e.g. Proton Beam Therapy
– Group JLA – Top 10 Uncertainties for prioritising research
– National Data Registry (NCIN)
– National Tissue bank at Southampton University funded by Brain Tumour Research, brainstrust and Charlie’s Challenge
– Dedicated brain tumour research centres
– Brain tumour charity representation on UK government bodies and in Europe through IBTA

Yet more needs to be done:

– To drive earlier diagnosis
– To ensure equal access for treatments
– To enhance the quality of life for patients
– To provide a fair share of research funding

Campaign with us: http://www.braintumourresearch.org/campaign-with-us

Together we will find a cure

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