Brain tumours kill more children and adults under the age of 40 than any other cancer
Looking back before looking forward
Looking back on 2022, a major piece of our brain tumour campaigning work was dedicated to the All-Party Parliamentary Group on Brain Tumours (APPGBT) inquiry ‘Pathway to a Cure – breaking down the barriers’. The only way to overcome any barriers to progress is to ask what those barriers are and in 2022 we read written evidence from 37 scientists and clinicians, we heard from 11 of these brain tumour researchers in oral evidence sessions, we asked charitable funders what they thought and took feedback from the pharmaceutical industry too … and we asked those affected by a brain tumour diagnosis with over 275 responses to our patient survey.
We are now crystalising the content gathered into a report and clear recommendations and the sharing of this report and the actions and outcomes arising from this piece of work will form a key part of our campaigning endeavours in 2023.
2022 saw the return of lab tours and the growth of the research and policy team at Brain Tumour Research with the addition of new colleagues, Dr Karen Noble, Thomas Brayford and most recently Nicola Gale our Research Communications Officer.
In 2022 our patron Caprice Bourret visited our Plymouth Centre again and our pin badges were worn at PMQs. Our friends in the millinery world helped us take our message to the Epsom Derby and the then, Secretary of State for Health posted a video wearing a hat on Wear A Hat Day.
There are now close to 1,200 of you, our campaigners representing 520 of the UK 650 constituencies – this is annual growth of 20% and 10% respectively and as we know this is a numbers game because the more our voice is amplified, the more our voice is heard.
As I reviewed my career at Brain Tumour Research, breakthrough was the word of my twelfth year and alongside what is happening at our centres we engaged with the pharmaceutical industry sharing knowledge on the developments of tumour treating fields by Novocure and a vaccine (DCVax) for brain tumour patients being trialled by Northwest Biotherapeutics (NWBio).
We spoke on countless TV news bulletins, commented on fundraising endeavours on local radio and offered comment on national and regional stories in the written press. We have been working alongside the BBC and Eastenders on the Lola Pearce storyline that has so much resonance with so many of you and is portraying the reality of a GBM diagnosis to a group of the population that we, as a brain tumour charity, just would not be able to access unless they already had a personal connection to our cause.
As well as campaigning for Government funding we of course fund our own research and it is these researchers who have been very much our focus when our research came under review as we conducted annual Centre reviews.
We held a successful and hugely optimistic researchers’ workshop where scientists attending were left in no doubt that, by donating to and fundraising for Brain Tumour Research you are showing huge amounts of trust in us, and that we, the charity, are investing that trust in our centres and our researchers – they give us the hope we need.
We were always clear though that it can’t just be charities funding research and our campaigning to increase the national investment in brain tumour research received a fillip from our Parliamentarian meetings including one with the Science Minister George Freeman. These are vital engagements as we push forward.
Alongside the inquiry updates, two blogs stood out for me this year. Firstly when we reported on ‘ What progress looks like’ and the news that in 2022 we could announce plans to launch an additional Centre of Excellence where scientists will be focused on helping to find a cure for brain tumours. That selection process is now well underway and as Sue Farrington Smith MBE, our Chief Executive said: “We are extremely proud to be in a position to launch this call for applications for a new Centre. Thanks to our supporters, including many brain tumour patients and their families and those whose lives have been changed forever by this devastating disease, the year to June 2022 saw us deliver our best financial year yet.”
The final blog from this year that will live long in my memory was on the impact of a parent’s story. Our charity has been hugely impacted by this year’s loss of Amani Liaquat, Tom Parker, Gorgeous George Fox and too many others.
George’s mum Louise said in the blog:
“It is so very important to us that George’s short life wasn’t in vain.
We campaign, we fundraise too and we talk on the media. We are Brain Tumour Research ambassadors. We are activists in a world that we never wanted to be a part of because it is what George would have wanted. Through the horror of never seeing our son grow into a man there is some optimism that we can, will, and will never stop trying to make a difference for future young brain tumour patients. It is some comfort to know that he is there encouraging us, supporting us and still putting others first.”
My memories of 2022 are the humbling altruism of families, the meeting of our brain tumour researchers with those whose lives have been ravaged by this disease, the sharing of stories, the lobbying of MPs, the growth of our communities and the relationships and affection that have created a powerful network that coalesces around our common voice.
Whilst wishing each and every one of you the best Christmas and New Year possible. We know that this time of year can be an awful time for many of our community, with grief and despair brought into sharp relief and the comfort of serenity in short supply. Remember we are a charity formed from the grief of premature loss. We know, care and we are here. We will be posting on social media over the coming weeks and so please do keep up to date with everything and please do comment and share.
We are a community with not one of us as strong as we are together.
So, roll-on 2023 and the optimism a new year brings, our first campaigning update will be emailed out on Friday 13th January.
Thank you for what you have done, what you are doing and what you will do in 2023 as we strive to increase the funding for the research that holds the key to unlocking the unique brain tumour puzzle.