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We are glad to hear @Number10gov is going to address #BrainTumourDebate. The tragic fate of #SkyeHall cannot be allowed to repeat itself
In Westminster Hall this Monday 18th April 4.30pm, there's a debate on the Petitions Committee report into the issues raised by e-petition 105560 which many of you signed, on funding for research into brain tumours, led by Helen Jones. The report found that brain tumours are the biggest cancer killer of children and people under 40, but that research into them has been underfunded for decades. As a result, the committee concludes, survival rates for brain tumours - unlike those for many other cancers - have improved very little in the last 30 years.
It has taken brain tumour charities almost 15 years to reach this point. Let's not waste it now! If you know someone who has been affected by a brain tumour please ask your local MP to attend the debate in Westminster and if they can't, to sign the EDM 1082 http://www.parliament.uk/edm/2015-16/1082. We are not asking for the world, just that the distribution of cancer funding is apportioned appropriately.
Skye died due to side effects, which were not able to be shared quickly and efficiently among paediatric consultants due to NO DATA COLLECTION SYSTEM for standard treatment protocols being in place in this country. He had the most common of all brain tumours. This is fundamental and must be addressed to prevent future deaths. We are supporting the Children's Cancer and Leukaemia Group (CCLG) in implementing a data collection system, but they will be requiring long term funding which should should come from Public Health England not from small charities struggling to make a difference. We will continue to play our part and fundraise, but we need to be met half way by the current Government.
To watch the Petitions Committee discuss the initial report in Westminster on Monday 14 March, please follow the link to the Parliamentary TV coverage.
For a short extract of David Cameron's comments in Parliament prior to Monday's debate Click Here
Sorry for the political tone of this blog post but we live to improve the future for children who face death well before their time and simple measures such as a data collection system will go a long way to helping prevent future tragedies.
Template Letter for your local MP. Feel free to use all or parts of this template letter to send to your local MP over the next few days / weeks.
We love and thank you all for your continued interest and support for our family. Wish us luck for Monday!