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

Scrutiny and interdependence

by Hugh Adams

Congratulations are in order for Imperial College Healthcare NHS Trust which has been recognised for  excellent care given to brain tumour patients. The Trust has been announced as one of six new NHS brain cancer centres to be named as a Tessa Jowell Centre of Excellence. The award has been given following significant service developments and engagement with the Tessa Jowell Brain Cancer Mission over the last 18 months. These six centres collectively support more than 1,000 new patients a year who will stand to benefit from the service improvements and commitment to innovation This initiative is part of the vision of the Tessa Jowell Brain Cancer Mission (TJBCM) which Brain Tumour Research is proud to be a part of, to ensure every patient has access to excellent care, no matter where they live. Imperial is also home to a Brain Tumour Research Centre of Excellence where world-leading research is taking place

Every year, our Brain Tumour Research Centres of Excellence undergo a rigorous Annual Review designed to measure progress and ensure funds are spent wisely. As well as being a chance to check on progress and future plans, these reviews offer the opportunity to illustrate our Research Centres’ impact and influence, and provide an idea of what increased funding could achieve. We are pleased to report that each of our Centres has made good progress in the last year and our Director of Research Policy and Innovation, Dr Karen Noble, writes about some of each centre’s achievements here

It isn’t just our centres whose activities are rigorously scrutinised. This week the current activities and future strategic and operational plans of the charity came under review in our termly trustee meeting. The trustees of Brain Tumour Research act as our ‘critical friends’ and are vital members of our team, helping to guide us closer to a cure with their unique expertise. Many have their own deep, personal reasons for being on our trustee board and you can find out more about them here.

This meeting was an opportunity for the newest member of our leadership team to meet the trustees because this week we are very pleased to welcome Russell Marriott to the role of Director of Income Generation and Development.

Russell joins the organisation with extensive experience in fundraising, having worked in the charity sector for more than 30 years. He has a very personal reason to join the fight to find a cure for brain tumours having lost a relative to the disease.

He said: “Sadly, like so many people, I have first-hand experience of this devastating disease and I am very pleased to be joining Brain Tumour Research at what I hope will be a pivotal time in the growth of the charity as it strives towards finding a cure for all types of brain tumour.”

With more than three decades of experience, Russell has raised more than £750m to date for organisations including The Royal Institution of Engineering and Technology, the Old Vic Theatre and BEN, the automotive industry charity. He will oversee the charity’s development and income generation strategy as it works to increase the national investment in brain tumour research to £35 million a year.

Our Chief Executive, Sue Farrington Smith MBE, said: “Russell joins at a challenging and exciting time. Thanks to our loyal supporters we are looking forward to a period of continued growth and remain confident in our ambition to extend our network of Brain Tumour Research Centres of Excellence in the UK. We have plans to announce calls for applications for a further centre in the next few months. Our vision is to find a cure for all types of brain tumour.”

NHS patients in England will have early access to potentially life-saving and cutting-edge treatments thanks to a new fund which has launched this week. Up to £340 million has been made available through the Innovative Medicines Fund to fast-track the most promising medicines to patients. Health and Social Care Secretary Sajid Javid said: “I want NHS patients to be the first in the world to access the most promising and revolutionary treatments that could extend or save their lives.”

The fund will support NHS England in offering patients potentially transformative new drugs while further real-world evidence is collected to inform a final decision by the National Institute for Health and Care Excellence (NICE) on whether the treatment is clinically and cost effective, reducing delays and boosting patient outcomes in the interim. 

Dr Noble from Brain Tumour Research commented on this news: “Accelerating access to potentially life-saving treatments is particularly critical for brain tumour patients, many of whom do not have the luxury of time. We welcome the launch of this fund and hope that brain tumour patients will be amongst those benefitting from quicker access to novel treatments.

“The fact remains, though, that for brain tumour patients these new therapeutic options just haven’t been available. The route to clinical innovation and new therapeutics remains underpinned by appropriate funding of early-stage discovery research, such as that which Brain Tumour Research funds at its Centres of Excellence. That begins the translational pipeline and that is how we will find a cure.” 

The vital role of charities was a subject for discussion at meetings we attended this week held by The Association of Medical Research Charities (AMRC). The AMRC is a membership organisation dedicated to supporting medical research charities in saving and improving lives through research and innovation and we are proud to be one of its 150 members. We joined meetings focused on pure research and on communicating what the AMRC, and its members, achieve and there was a chance for face-to-face networking with contemporaries from other charities too. This was the first post pandemic face to face event for many people and a very welcome chance to share best practice and compare experiences.

The AMRC aim to unite and champion the sector, helping to drive positive change in the research and health landscape. We wholly support them in that aim.

Primarily though we champion the cause of brain tumour patients and we are proud to announce that the Summer 2022 edition of Believe, ‘The news magazine for brain tumour activists’, is out now. As always it is packed with inspirational stories, awesome achievements, fundraising ideas and so much more.

To request your physical copy, please email  supportercare@braintumourresearch.org or call 01908 867200 and we will get one (or more!) shipped out to you as soon as we can. Alternatively, you can download a copy here.

Wednesday was World Brain Tumour Day which was the subject of a post on our Facebook page drawing lots of comments and interactions –our Facebook page is a great way to keep up to date with what we are up to, to get all of our latest news and to interact with other members of our community. 

If you’re not already a part of our Facebook community please join over 150,000 others and give it a go!

Also on our social media pages in the past fortnight has been the support of the millinery and horse racing community with our #HatsFitForAQueen campaign. Sunday is the last chance to bid on of these stunning hats. Pictured are two of the auction pieces being modelled on Derby Day by Mary Berry and Clare Balding.

In her quote earlier in this update Dr Noble mentioned the translational pipeline that moves from the scientists’ bench to the patient’s bedside, but there is another pipeline. That pipeline goes from activists and fundraisers reading our magazine, supporting us on social media, lobbying MPs and taking on fundraising challenges and leads to our funded centres achieving positive annual reviews and publishing impressive and progressive papers. It is that pipeline that is observed, scrutinised and supported by our leadership team, our trustees and our Brain Tumour Research Scientific and Medical Advisory Board (SMAB).

We are all in this together, we are interdependent, and everything every one of us does makes a difference and takes us closer to our vision.

Thank you for what you have done, are doing and will do to support Brain Tumour Research.

Finally, this week why not watch Celebrity Catchpoint this Saturday, 11th June at 7.20pm on BBC One – our friend Denise Van Outen is playing for Brain Tumour Research and if you are on Twitter, I am sure she’d love to see your support of her endeavours on our behalf.

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