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

The culture at Brain Tumour Research Campaigning update

by Hugh Adams

One thing I am often asked is whether there is a personal story behind my working for Brain Tumour Research – is there a personal connection that motivates my work? I used to say “No – that isn’t the case,” because strictly speaking it wasn’t, however, I stopped saying that very early into my time with the charity, many years ago (in case you don’t already know I am into my second decade at Brain Tumour Research) because there are many personal stories that motivate me and, in our charity, I’m not alone in feeling that.

If you fundraise for us your merchandise needs are fulfilled by our team of office volunteers who all have personal reasons to support our work – for some, it is their diagnosis, for others, it is following a family member being diagnosed.

If our volunteers did not do what they do, we simply could not operate, and we are indebted to them.

In our office, my colleagues who pick up incoming calls all have personal reasons to support the charity because they will all have taken one particular phone call they will always remember. It won’t have been expected but it will have been an outpouring of despair and confusion and grief from someone who needed someone to talk to.

The PR team who tell your stories to the wider world all have stories that have haunted them, phone calls that have lasted for hours, that have left them in tears but stories that have inspired them too.

The digital marketing team read your Facebook and other social media posts and reply. They try and say what they can in just a few words to help, to motivate, to support and let you know ‘we are on your side’.

Our community fundraisers share your triumphs but cannot fail to be moved by your stories and the reasons why you are motivated to fundraise for us

The magazines we write, the leaflets we produce all reflect what we have all heard.  What’s more, we are formed from the loss of Alison Phelan, Sue, our Chief Exec’s niece to her brain tumour when she was seven years old and the loss of our other founders loved ones: John Fulcher, our Chairman’s husband, Diana Ford our President’s daughter and mother to three of his grandchildren, Anna Hughes our Deputy Chairman’s three-year-old daughter who all inspire us along with Charlie Boutwood, son of our other founding Trustee, who was diagnosed at twenty months with a medulloblastoma in 1993 and is now a successful young man.

Right across the charity for us this is personal, we are human, we cry, we despair, we care.

It is personal and it is a privilege

As a research funding and campaigning charity, we aren’t seen as a frontline service but what more frontline service could there be than to provide hope? Research provides hope – campaigning provides hope – as our campaigner, Peter Realf said: “Research gave my son hope, the campaigning we have done since Stephen died and the impact we have had has given me the belief that my son did not die in vain. When my son was diagnosed in 2008 his oncologist said: “who knows what we will know about brain tumours in 10 years time” (2018). This gave Stephen hope, research gave him hope, he hoped things would change, improve and save him. They didn’t but my hope for other families lives on through research.”

Last week I had a phone call with a supporter who I hadn’t spoken to in five years, whose loss was five years ago, but they have decided the time to be more active as a campaigner is now. I spoke to them ahead of a radio interview they had set up to promote the #braintumourpetition (62,000 signatures and counting). Sometimes we don’t hear from supporters for weeks, months, years but we will always be here when we are needed.

MPs have long memories too and this week we have had an MP contact me to arrange a meeting about the funding for brain tumour research. This might not seem unusual, but it is a change to the normal dynamic where I am chasing MPs (and being an irritant). This MP knew about us because of a constituent who contacted them nearly a year ago and a brief Twitter exchange. Never assume that your hard work is falling on fallow ground.

Persistence, tenacity and a vision will get there in the end – when we work together.

So, we will keep on sending our fundraising packs, and telling your stories, and posting about you on Facebook and, to you campaigners and activists, I promise we will carry on being an irritant to Government.

This is a long game, where we move as fast as we can, to make a difference.

It is not about being the biggest, it is about being the best we can be and in doing that raising the game of others even if sometimes it overwhelms us both physically and mentally

I know this isn’t my usual campaigning blog but if you have read this far, I hope it has given you a bit more insight into the culture at brain tumour research.

It informs everything we do.

I’ll be back with a full update on all things Westminster next week before the house goes into recess for a week – there is a lot going on with letters, meetings and questions.

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