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

The impact of sponsoring research

by Hugh Adams

It is important as we drive our agenda forward that we recognise, celebrate and communicate about the impact we have had so far and I recommend all campaigners look at this blog put together by my colleague Dr Karen Noble on the difference we have made.

As Dr Noble says in the blog “this financial year, we’re granting £2.5 million to our Research Centres and BRAIN UK, the virtual brain tumour tissue registry based at the University of Southampton. Our research programmes remained resilient throughout the challenges presented by the COVID-19 pandemic and their continuing success is highlighted by the increasing number of significant breakthroughs being made.”

This is especially topical in a week where other news has been about how fewer new cancer research projects have been funded during the pandemic.

Something that has been highly encouraging and is a brilliant way of showing exactly what money raised for Brain Tumour Research can do is our lab tours and this week we were able to welcome supporters back to a Research Centre.

Patients, their families, those who have lost a loved one, fundraisers, scientists, celebrities, and corporate supporters gathered at our Centre of Excellence at Queen Mary University of London this week as we relaunched the Wall of Hope.

It was the first event of its kind to take place at one of our Centres since our lives were disrupted by the pandemic. Guests were invited to see for themselves the cutting-edge research taking place in the labs at Blizard Institute in Whitechapel and to hear updates from Brain Tumour Research Chief Executive, Sue Farrington Smith MBE, and from Professor Silvia Marino who leads the research team.

There were poignant updates too from those closely affected by this devastating disease including Eddie Adams and his mother Julie Ruggiero who spoke moving about what Eddie’s diagnosis had meant to them and Eileen Smith who lost her son Michael.

Several supporters placed tributes on our new-look Wall of Hope, with each tile representing the £2,740 they raised to sponsor a day of research at one of our Centres.

Among them were patient Liam Bergin, who travelled from Cheshire with his son Joe. In a touching tribute, Liam placed nine tiles a number of which were dedicated to young people who have lost their lives to brain tumours. There was also cause for celebration as Harriet Low attended, along with her family, immediately after her graduation ceremony at UCL. Harriet’s brother, William, who died in 2017 at the age of 17, is the inspiration for The William Low Trust, a Member Charity of Brain Tumour Research. With just over a week to go until Wear A Hat Day, the world of millinery was well represented with celebrity milliner Stephen Jones OBE and milliner to Her Majesty The Queen, Rachel Trevor Morgan among the guests who took part in a photocall to celebrate the upcoming fundraiser. 

Keep your eyes peeled on our social media pages as we’ll be sharing exclusive interviews with milliners soon. It was a wonderful occasion to be back together with supporters and we are looking forward to welcoming more of you to our Research Centres in the future.

Could you sponsor a day of research?

To sustain long-term peer-reviewed research at our Centres of Excellence, we are striving to help each of our Research Centres to raise £1 million a year.

That’s £2,740 per day, per Centre.

When you raise enough to sponsor the equivalent of a day of research, you will be offered the opportunity to visit a Centre, meet the scientists and hear about their work. We will work closely with you to create a special tile in memory or in support of your loved one to be placed on the Wall of Hope.

Every penny adds up.

Please keep fundraising and striving to sponsor a day of research and help us find a cure for brain tumours.

Whilst we are focusing on fundraising you could get fit with Mr Motivator to help find a cure.

The APPGBT inquiry met with clinicians engaged in research this week. It was a lively session and we expect the same for next weeks’ session which will be an opportunity for those engaged in the early stage, discovery science to share experiences and thoughts on barriers hindering the route to improved patient options and outcomes.

The APPGBT meeting the following week (Tuesday 29th March) will provide the opportunity for us to recap on the inquiry progress so far and we would like as many Parliamentarians as possible to be present.

Many of you have already helped us with this and we expect new faces to be present on the 29th, so thank you for that, but if you have yet to contact your MP about the meeting please could you do so.

All you need to do is send the following (or a personalised version of the following) as a ‘Save the Date’ email to your MPs this weekend? Remember to Cc me (hugh@braintumourresearch.org).  

Subject; - APPG on brain tumours 29th March 09:00 – 10:30

Dear <Your MP’s name>

As your constituent, and as someone who is passionate about improving options and outcomes for brain tumour patients (because … ‘ - this is your space to share your personal reason for being a brain tumour campaigner) I am asking if you could please make space in your diary to join the next APPG on brain tumours meeting. The APPGBT will be taking place via Zoom on Tuesday 29th March from 09:00 – 10:30 and will be chaired by Derek Thomas MP. An invite, agenda and briefing document from the charity Brain Tumour Research who provide the APPG’s secretariat will be forthcoming in due course and Hugh from the charity is Cc’d

Your support would be hugely appreciated.

…..

<Your Name>

<Your postal address and postcode>

If you don’t already have it - you can find your MP’s name and address here:

https://members.parliament.uk/members/Commons

Please forward any replies to me hugh@braintumourresearch.org

For differing reasons we have two MPs who are very supportive of our work as you can see from this Twitter thread from Guy Opperman and also from news that on Saturday 26th March 1pm you can join Derek Thomas MP( Chair of the APPGBT) on a dog walk to mark Brain Tumour Awareness Month. Dogs and humans to meet at Wharfside Car Park adjacent to Penzance Sailing Club. Sounds like fun if you are in the area!

As our friends at the Association of Medical Research Charities (AMRC) said this week; “Many of us wouldn't be here today without research. It’s constantly shaping and improving our health and social care” To acknowledge and celebrate this they have produced a  new animation explaining how the charity, public and industry sectors help make research happen.

It is all about impact and at the beginning of this update we celebrated what we have done so far but we will never forget why we do it - the reasons that spur us on to do more, to push harder to be tenacious, persistent and never to give up.

All of us who knew his story and had had the chance to meet Jay were deeply, deeply saddened to learn that he has died and the final thought this week is in memory of Jay.

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