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

Minutes, Hilary Benn and genomics – a week in campaigning

by Hugh Adams

The minutes from last week’s virtual APPG are on our website and you can access them here

A meeting like this throws up actions, and earlier this week we had a chance to discuss these with the APPG Chair Derek Thomas MP. Although the House is now in recess, with MPs hopefully enjoying a chance to recharge their batteries following a momentous past three months, we have a number of other campaigning meetings before the next APPG in October.

October’s APPG will be a bumper event with the agenda already looking packed but please do continue sending me things you would like to be added to future agendas – I can’t promise they will be discussed in October but I can promise they will get full consideration and certainly won’t be kicked into the long grass because Brain Tumour Research and the APPG on brain tumours really do care about what you care about. I can be contacted at hugh@braintumourresearch.org

By the way August is the month to update the campaigning pages of our website and huge thanks to those of you who sent over your kind and moving comments about being a Brain Tumour Research campaigner and how it makes you feel. I will incorporate as many as I can on the updated webpages as they are so motivational.

This week Hilary Benn MP wrote to the Secretary of State for Health and Social Care, Matt Hancock. Based on what was discussed at the APPG (and recorded in the meeting’s minutes) he asked him “for what reason only £6 million of the £40 million in funding allocated for brain tumour research has been allocated to such research to date; and if he will make a statement.” You can read it on the parliament website here.

In other news, today Brain Tumour Research is pleased to have been invited to support the Less Survivable Cancers Taskforce (LSCT) and together we are joining eight other cancer charity and research organisation invitees who have signed up as registered supporters. You can get the whole story here.

The online meetings have continued apace this week for me. I have mentioned that we work with the AMRC and Cancer 52 before but a new one for me this week was the Genomics Strategy Group.

The AMRC did well getting great coverage in The Guardian on Monday and we were pleased to have helped them in gathering MP signatures for a letter to the Chancellor – more here.

Cancer 52 has undertaken two surveys during the pandemic – one patient focussed with the other looking at the impact of COVID - 19 on charities – no space to look at these this week but I will feed in some of the top-line news from them in the next couple of weeks. They have also made a video with cancer patients talking about their care which is aimed at encouraging patients to return to their treatment regimens post lockdown – you can see it here.

As for the Genomics Strategy group although it will take me a bit of time to understand some of the terminology, and in particular the acronyms, I will do so because this is a fantastic piece of cutting edge work – that fits in well with our cutting edge research. If you have a chance this weekend please do read about The 100,000 Genomes Project established to sequence 100,000 genomes from around 85,000 NHS patients affected by a rare disease, or cancer and in the process creating a new genomic medicine service for the NHS – transforming the way people are cared for and bringing advanced diagnosis and personalised treatments to all those who need them. Personalised treatments could mean an end to rarer cancers as all cancers will be treated for their individual genomic profile with the scientist being as involved as the clinician in diagnostics and therapeutics. It is a truly exciting time with the funding of discovery science as vital as ever.

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