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

A personal blog by our Head of Stakeholder Relations Hugh Adams

by Hugh Adams

Yesterday marked my 10th year as part of our remarkable charity. I hope you will indulge me this week as I write a personal account of my journey with Brain Tumour Research over the past decade.

I have met many of you, but for some of you I’m just the guy who sends out this weekly update, so, briefly, this is my professional life before meeting up with our founder and Chief Exec, Sue Farrington Smith.

On leaving college I joined the BBC and began a media career that lasted over 20 years before I became somewhat disillusioned with it all. I Ieft London for a more pastoral location and tried my hand at a couple of things (working in a prison, managing a wine shop were two of them) before seeing in the local paper that a charity, Brain Tumour Research, had their first full-time vacancy.

On my first, serendipitous meeting with Sue, it was clear the passion and drive that was at the core of her ambition for the charity, but also the narrative of premature death and of poor research funding that underpinned the charity’s vision to find a cure. Crucially there was a lack of brain tumour awareness in the general public and a lack of empowerment in our own brain tumour community.

I felt I could help with that – it felt that everything I had done before was a rehearsal for my new career ( except perhaps the wine shop!).

Luckily Sue agreed.

What has followed has been a decade of hard work and growth, with moments of elation, moments of desperation, but a core belief, and an absolute resolve that we must improve options and outcomes for those diagnosed with a brain tumour.

Campaigning has been central to this and we have always been clear that to achieve the research funding levels required to see the progress achieved in other site-specific cancers, we must call on the UK Government to support us.

Working with the Realf family, the e-petition, the Westminster Hall Debate and subsequent reports have been a source of huge pride. Together, in the past decade, we have moved from shouting outside Westminster to talking inside. Our work with the APPG is a portal for change and your continued support for this work has been truly gratifying.

I’ve stood next to Matt Hancock as he has been updated on our work, (I’ve even been photographed standing next to Boris Johnson as we donned our ‘WearAHatDay’ hats!) and joined celebrities like Caprice, Debbie McGee, Sheila Hancock and Sarah Beeny at our Speaker’s House events. We have framed the debate with our reports and our Manifesto. Our member charities, our fundraising groups and individual campaigners have joined us at political events, telling their stories in their local media and engaging their MPs.

We have continued to punch above our weight!

When people ask me if I have a personal reason to work for Brain Tumour Research I used to say I didn’t because the disease hadn’t directly impacted on a close member of my family. I don’t say no to that question now. I have hundreds of personal reasons why I work for Brain Tumour Research - too many, far too many of our friends are no longer with us, and I have real sadness that they supported us but we could not deliver to them the cure they needed. Their desire to improve outcomes for future brain tumour patients, even though any progress would come to late for them, is as empowering as it is humbling. They wouldn’t want us to stop because we couldn’t help them, so the loss and sadness must only spur us on to achieve more.

It has been quite a journey and I am unshakeable in my belief we are doing things in the right way for the right reasons. There is no alternative because the basic science, of the type we fund, underpins the progress that happens further down the line. It is translational research from the scientist’s bench to the patient’s bedside that holds the key. At this time when research funding is at risk more so than ever, let alone in the past decade, we must stay strong and work together.  We have come a long way in the past decade and I am proud to have played a small part in that – I am prouder still to be a part of a brain tumour community that inspires me daily. Thank you all for what you have done for me and for Brain Tumour Research and for those of you still reading, your indulgence this week.

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