It is good to be back after a week off and we headed straight to Westminster on Tuesday as Brain Tumour Research CEO Dan Knowles and Director of Research, Policy and Innovation Dr Karen Noble met the Health Minister Andrew Stephenson MP (they are pictured below after the Portcullis House meeting). Their meeting was joined online by Professor Lucy Chappell, Chief Scientific Adviser to the Department of Health and Social Care and CEO of the National Institute for Health and Care Research (NIHR).
An open discussion demonstrated a common desire to improve options and outcomes for brain tumour patients and a keenness to remove blockages to funding across the translational pipeline – a pipeline that shouldn’t just be seen as left to right but one that must be “joined up”.
There are other outcomes from this, and other meetings that the minister has been having concerned with taking the cause of brain tumour research forward, and we will report on them in the coming weeks.
At Tuesday's meeting the minister declared himself a “huge fan of the All-Party Parliamentary Group on Brain Tumours (APPGBT)” and coincidentally Tuesday evening saw a meeting of the APPGBT which Brain Tumour Research is proud to provide the secretariat for.
The meeting enjoyed the attendance of two former ministers, Will Quince, Andrew Stephenson’s predecessor at the Department of Health, and George Freeman, former first UK Minister for Life Science.
The meeting was chaired by Scunthorpe MP Holly Mumby-Croft and heard from Professor Kathreena Kurian on 'Neuropathology, tissue storage and whole genome sequencing', from Neurosurgeon Mr Kismet Hossain-Ibrahim on 'Focused Ultrasound' and received updates from Dr Nicky Huskens of the Tessa Jowell Brain Cancer Mission and from me, Hugh, on what has been happening since the last meeting of the APPGBT in the Westminster brain tumour space.
This meant I could share the latest news on Vorasidenib, including this week's response to Caroline Lucas's question on the matter (https://questions-statements.parliament.uk/written-questions/detail/2024-02-07/13599), plus what happened when we handed in our petition to Number 10 (see the photo below).
You can read a full briefing document that we made available to politicians ahead of the meeting here
Just a quick reminder that this year, as we celebrate our 15th anniversary, there are many ways you can get involved during Brain Tumour Awareness Month to bring hope to the one in three people who knows someone affected by this devastating disease.
On Friday 1st March, at 11am, a minute’s silence will be observed at our four Centres of Excellence.
We will also mark this moment of remembrance at our Head Office and online – if you would like to join us via Zoom email me, hugh@braintumourresearch.org and I'll send you the link.
We would love you to join us for this poignant moment in time – an annual event that is so special to all of us at Brain Tumour Research.
Also during Brain Tumour Awareness Month, on Thursday 14th March from 13:00 to 14:15 there will be a reception to raise awareness of brain tumours and the important research happening in Scotland. The reception will provide a chance to hear speeches from Beatrice Wishart MSP, whose daughter is living with a brain tumour, Theo Burrell, BBC Antiques Roadshow expert and Brain Tumour Research Patron, and Professor Steve Pollard from the University of Edinburgh whose team is working to better understand brain stem cells and their potential role in glioblastoma – a fast-growing brain cancer.
This is a template email for our Scotland-based brain tumour campaigners to send to their MSPs:
Dear [name of MSP]
I am writing to you, as your constituent and as a campaigner of Brain Tumour Research, to request your support for those affected by brain tumours in your constituency by attending the parliamentary reception on Thursday 14th March 2024, 13:00-14:15pm in the Burns Room.
Brain Tumour Research is holding the event, during Brain Tumour Awareness Month, to raise awareness of brain tumours and the important research happening in Scotland and across the UK. The reception will provide a chance to hear speeches from Beatrice Wishart MSP, whose daughter is living with a brain tumour and Theo Burrell, Brain Tumour Research Patron and BBC Antiques Roadshow expert, who was recently diagnosed with a glioblastoma (GBM).
We will also be hearing from Professor Steve Pollard from the University of Edinburgh and whose team is working to better understand brain stem cells and their potential role in glioblastoma – a fast-growing brain cancer. Also speaking is Dr Joanna Birch, from the University of Glasgow, who is interested in invasion and metastasis, translational science and pre-clinical modelling of cancer biology.
Brain tumour research is important to me because…….
You can RSVP to confirm your attendance by emailing Thomas.Brayford@braintumourresearch.org.
Yours sincerely,
[name and postcode]
Below is Theo pictured wearing our iconic Lock & Co top hat and getting ready for Wear A Hat Day the culmination of all of the activity in Brain Tumour Awareness Month.
There will be more about how to get involved in forthcoming updates. We are pleased to pass on a warm invitation to the 7th annual conference of the Success Charity which is themed ‘Successful Destinations’ and will take place on Saturday 2nd March at 1 Wimpole St (the home of the Royal Society of Medicine).
This conference is an innovative opportunity for both patients and a diverse array of hospital and community professionals, to network and share experience in the new emerging field of survivorship after childhood cancer treatment – specifically brain tumours – now that 80% survive and live long lives with the often forgotten multi-system consequences of the tumour and treatment.
This is a chance to hear the survivor and family voice itself, from children as young as eight and a chance to share experiences, foster education and collaboration in this new field, with decision-makers and parliamentarians to help all those who experienced a brain tumour under 25 years old , achieve "brighter futures".
You can find out more here: https://successcharity.org.uk/success-conference/
As I sit here tapping away to bring you this campaigning update I thought you may like to see what that looks like so here is a photo taken by a colleague. What you can't see are the photos and sadly, the Orders of Service for funerals that I have attended, that I keep on my desk to remind me, daily, of the wonderful people I have known well that have been taken far, far too early by this devastating disease.
It is in their memory that I do what I do.
It is their legacy that informs the actions of all of us at Brain Tumour Research and it is them that we think of when we go into bat for our community in campaigning meetings with ministers and politicians across the United Kingdom.
That will never change
It is in their memory that I do what I do.
It is their legacy that informs the actions of all of us at Brain Tumour Research and it is them we think of when we go into bat for our community in campaigning meetings with ministers and politicians across the United Kingdom.
That will never change.
That’s it for this week.
There will be another update next Friday and we hope to many of you will join us via Zoom for our Minute’s Silence at 11:00.
Wishing you a peaceful time until then.
Hugh and Thomas.