This week’s blog is an exact copy of this week’s update for our campaigners. If you are interested in this type of content and would like to join us then email me directly – hugh@braintumourresearch.org – I ‘d love to add you to our campaigning database and you can help us make a difference. Hugh

So, the APPG on brain tumours was held virtually on Tuesday, the technology behaved and it was a very good meeting.

The main worry I had was would the meeting be quorate (having enough Parliamentarians attending to carry out business)? Even though we had a number of late withdrawals, being quorate was never going to be a problem on Tuesday because you, our campaigning taskforce, had asked your MPs to join the meeting and they did in sufficient numbers for the meeting to proceed – so huge thanks once again.

My apologies that, although I have the meeting’s minutes in my possession, I cannot post them on our website as they are in draft form until we have shown them to, and agreed them with, the APPG chair Derek Thomas MP. Sue and I have a meeting with him on Tuesday. Next week I can let you know about actions going forwards and how we will continue to seek transparency around Government spend on vital research and any barriers to researchers accessing the NIHR’s £40 million funding opportunities announced in 2018

Finally on the APPG here are two pieces of Latest News on the subject Grieving Dad demands answers at APPG on brain tumours as Promised millions not yet spent on brain tumour research

Actually, when looking at our campaigning website I was thinking it needs some new content (another task for the next couple of weeks). Some new, helpful content would be quotes from the taskforce that could act as motivation and encourage others to join us. If you have a moment over the weekend would you mind completing one of these sentences and sending back to me

“I’m a campaigner for Brain Tumour Research because ….”

“Being a campaigner for Brain Tumour Research makes me feel…”

Thanks so much, really looking forward to reading those.

I mention Sue quite a bit in these updates ( “Sue and I had a meeting with Derek Thomas”, Sue’s speech etc) but some of you might not know Sue ( Farrington Smith MBE, our Chief Exec) so, for those of you who don’t, you can click here to see about her and find out about her family’s brain tumour story – scroll down and you can find out about me too!

There is a lot of campaigning activity from families ( like Sue’s) who have been affected by DIPG currently and there is an update on the recent e-petition by Fiona Govan that passed 100,000 signatories here; Grieving gran’s petition to be debated. Also in the House this week two MPs mentioned their constituents who have DIPG stories to tell; Sarah Atherton MP  spoke about Eva ( @UnbeatableEva) Slapa and her family’s fundraising to get treatment abroad - the Prime Minister vowed to do ‘everything he can’ to support – and  Kirsten Oswald MP told the Speaker about her constituent Daniel Caplan. I am sure we would all join in sending our sincerest good wishes and affection to Eva and Daniel and their Mums and Dads as they face such tough times.

With summer recess starting at Westminster on Wednesday I am wondering about what I might be updating you on over the summer months until Parliament returns in September. I do have a few things up my sleeve but as always if you have feedback and ideas for content – things that you’d like to know more about or general ideas and queries please, please do get in contact. We are the united voice of the brain tumour community and to be stronger we must all make our voices heard.

Related reading:

• What is a diffuse intrinsic pontine glioma (DIPG)