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

Brain tumour research questions asked in the House of Lords

by Hugh Adams

On Thursday there was a House of Lords brain tumour question and subsequent mini debate. Having sent briefing documents to Peers attending we were delighted when some of our suggested questions, or versions of our suggested questions, were asked. Particular thanks to Baroness Morgan, who, through her relationship with one of our key activists, is a supporter of many years standing.  A full report on Thursday’s proceedings is available on Hansard, but the key thing is that we will be meeting with the Parliamentary Under Secretary of State at the Department of Health and Social Care, Lord Bethell, in due course. Yesterday he also made a commitment to working to improve access for brain tumour researchers to the NIHR money made available for allocation in 2018. A more concise version of what happened yesterday is on our Latest News pages as well as our Facebook page.

Follow the links above and you will also see a further link to a blog piece by Consultant Neuropathologist Dr Kathreena Kurian. Dr Kurian is a passionate campaigner for better research funding. Her blog proposes a clear pathway to improve the flow of money from the NIHR to brain tumour researchers We will be taking these ideas forward and look forward to a continued collaboration with Dr Kurian.

Last week’s update was all about the APPG and the minutes of that meeting are uploaded to our website now, and this week we had our first post APPG meeting with an MP, with another set for next week.

These are exciting times and I feel things are moving along and momentum is gathering but we won’t delay, funding for brain tumour research has fallen behind before and we must not let that continue to happen, not in the time of a pandemic, not ever.

My campaigning week has also involved being part of a Keep Up With Cancer - Cancer52 roundtable. Keep Up With Cancer (KUWC) comprises nine life science companies (GSK, BMS, Novartis etc), who are, in partnership with Cancer52, bringing together charities, patient groups, industry and cancer policymakers to agree what can be learned from the response to the COVID-19 pandemic and then work together to embed positive system changes. There has been innovation during the pandemic and we need to lock that in whilst restoring what worked well before. Critical for a research-focused charity is the translational pipeline toward clinical trials and that is where my focus is during these meetings.

The Cancer52 Policy and Public Affairs Steering Group (PPASG) meet this week too and that is such a valuable, collaborative opportunity to meet with colleagues from other rare and less common cancers to see what we can change and influence when we work together.

As you will probably know another organisation, we are a member of is the National Cancer Research Institute (NCRI) and they are producing a booklet ‘Demystifying Patient Public Involvement (PPI) in Cancer Research’. I wrote a short piece to go into this booklet on behalf of Brain Tumour Research this week and when that booklet is public I will either attach to one of these updates or make the link available, as I know some of you are very interested in this area.

Finally, I conducted a telephone interview with a national broadsheet newspaper this week (hopefully more on that next week) and held a Zoom interview with BBC South about Ollie Gardner, the support of his family and the #braintumourpetition.

Both of these news stories involve families who have endured, and are enduring, the most painful of losses and whose lives have been filled with the anguish and despair that brain tumours can bring. Yet they have found it within themselves to share their stories and campaign with us, to push towards an improved outlook for anyone diagnosed with a brain tumour.

I know I speak for everyone who works at Brain Tumour Research when I say they inspire and humble us – they are why we do what we do.

If you would like to share your story with us and help us to raise vital awareness please email my colleagues

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