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Brain tumours kill more children and adults under the age of 40 than any other cancer

Brain Tumour Awareness Month, APPGBT, Wear A Hat Day & Great News! - Campaigning update

by Hugh Adams

The strange thing about this week’s blog is that it is going to be shorter than normal…because there is so much going on!!!

To begin with we have Brain Tumour Awareness Month (BTAM) beginning on Monday and at 11:00 we have the minutes silence at our research centres to reflect on those we have lost to a brain tumour. Once again, we have been wonderfully supported by our member charity The Jane Packer Foundation this year and our thanks are also with the scientists as they perform their essential work at our centres and help facilitate this special moment.

We will post photos on our social media platforms on Monday.

Thanks too to those of you who are joining the Brain Tumour Research team virtually on Monday for a 30-minute (10:45 and 11:15) chance to be together at the launch of BTAM – if you would like to join us email me (hugh@braintumourresearch.org).

The All-Party Parliamentary Group on Brain Tumours (APPGBT) will meet on Tuesday – again full updates will be on our Latest News page plus we will aim to have the minutes uploaded by the end of the week and that will be a chance for you to see if your MP joined the meeting – if they didn’t let’s work together to make sure they are at the APPG’s AGM which will be in May/June.

We have the virtual Westminster event in the diary for 16th March – 19:30 – 20:30. I mentioned this last week, it is bring your own drinks (and your MP if possible but that’s not obligatory) but you won’t need to pay for a taxi home afterwards. If you would like to join us and would like to invite your MP to join us too then email me and I’ll send over a template communication for you to send to them.

We also want MPs to show their support for BTAM, Wear A Hat Day and Brain Tumour Research on their social media platforms and details of how we want all of you to help us do that will be in next week’s update.

Now I’m sure there was something else…what was it, oh yes the #braintumourpetition

WE DID IT !!!!

100,000 people signed and said enough is enough – brain tumour research mustn’t be left behind. We want parity of funding for brain tumour research.

We could not be prouder of you all.

You signed, and shared and shared again, together we did it.

As you will know if you saw my mid-week update (if you aren’t getting my weekly updates via email then get in touch and I can add you to our campaigning database), we are putting together a petition report that will be ready to deliver to the Prime Minister at the end of this packed BTAM.

This will celebrate the petition and honour our community, but it will be a forward-looking document too because time is not on our side. We all want change and we will be asking for increased funding at the very highest level, in order to build capacity, increase infrastructure and accelerate treatments so that we can improve outcomes for those diagnosed with a brain tumour.

In their March 2016 report ‘Funding for research into brain tumours’ The House of Commons Petitions Committee declared that ‘successive Governments have failed brain tumour patients and their families for decades’.

No longer can that be the case.

BTAM, APPGBT, Wear A Hat Day and 100K – as I said at the beginning it doesn’t look much written down but my word it is a lot of work but as we head toward BTAM and the reflection of the minute’s silence I hope we can all afford a little satisfaction in the fact that as campaigners we are playing a part in making a difference in the brain tumour world.

Thoughtful, angry, determined, optimistic, distressed - your brain tumour journeys will have made all of you feel many different emotions but thinking of what we have done together please allow yourselves a moment to feel proud.

Thank you it remains personal and a privilege to work with you all

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