Oh Vienna, Au Revoir and dear Liam

3 min read
 by Hugh Adams

This week we have been in Vienna at the 5th Biennial World Summit of Brain Tumour Patient Advocates. The aim of the summit has been to bridge our brain tumour communities across the globe by building progress and by building hope. 

It is all the work of the remarkable Kathy Oliver, Chair and Co-Director of the International Brain Tumour Alliance (IBTA) and her team of dedicated international supporters and advisors.

In Vienna there were nearly 100 attendees from 30 countries and Brain Tumour Research Hugh Adams, our Head of Stakeholder Relations, was present once again, having attended all four previous summits. 

Kathy Oliver 

Session subjects at the summit ranged from improved blood-brain barrier penetration and emerging technologies such as nanopore sequencing and AI based image analysis, to the challenges of a brain tumour diagnosis in Mongolia and the damage to clinical trials in Ukraine, which had previously been a leader in the field prior to the conflict there. 

One breakout session of particular interest was on clinical trials, which featured a presentation from Dr Manmeet Ahluwalia from the Miami Cancer Institute. Obviously, access to trials for brain tumour patients is a key campaigning focus for us.

The international feeling at the summit was that too often trials are seen as a last resort to try to access when other standard-of-care treatments have failed.

This shouldn’t be the case though and brain tumour patients should be looking to access trials on diagnosis – if those trials are available. 

Of course, too often that isn’t the case. In the US 21% of brain tumour patients participate in clinical trials and 11% of GBM patients. 

Our ambitions as set out in our manifesto for at least 15% of brain tumour patients to be participating in clinical trials by 2025 are modest by comparison but vital in their importance. 

Manmeet S Ahluwalia MD, MBA 

Brain Tumour Research was proud to be asked to present at the summit and to share some best practice and experience on community engagement and campaigning. 

This was fresh in my mind as I had also prepared two presentations for a team development day held on Wednesday. 

One was to outline to the rest of the team at Brain Tumour Research what our campaigning objectives are for 2023/24 and for the last presentation of the day it was time to celebrate the last day of our founder and Chief Executive Sue Farrington Smith MBE who is stepping back from the role of Chief Executive to join the Board of Trustees where she will take a keen role in supporting and advising on our campaigning endeavours.  

Sue Farrington Smith MBE 

We took time to look at what, with the Campaigner in Chief at the helm, the charity had managed over the past fourteen years.

Brain Tumour Research was launched in 2009 as a collaboration of 14 charities coming together, determined to raise awareness and increase funding for vital research.

Despite brain tumours being the leading cause of cancer deaths in children, brain tumour research was and sadly remains woefully underfunded receiving just 1% of the national spend on cancer research in the UK since records began in 2002. In recent years the annual spend has increased because of the role we have played in increasing the profile of the disease.  

The aim of the founding charities was for Brain Tumour Research to provide a sustainable level of funding of £1m per year to seven dedicated brain tumour research centres across the UK in collaboration with member and other charities.

The second strategic aim was to build on the successful lobbying that the member charities had achieved to date (including the establishment of the Brain Tumour All Party Parliamentary Group in 2005) and influence the growth of the market for brain tumour research funding to £35 million to achieve parity with breast cancer and leukaemia.  

The charity achieved significant income growth in its first eight years, establishing its first Centre of Excellence at the University of Portsmouth in 2010 in collaboration with Ali’s Dream and Charlie’s Challenge.

It established a further three Centres: University of Plymouth and Queen Mary University in London in 2014 and Imperial College in collaboration with BTRC in 2015.

In 2019 following Professor Geoff Pilkington’s retirement we stopped funding research at the University of Portsmouth and in 2023 have been delighted to announce funding for our new fourth Centre at The Institute of Cancer Research. 

Brain Tumour Research also achieved other significant milestones in the campaigning arena:  

  • 2015 Membership of Association of Medical Research Charities (AMRC)  
  • 2016 Successful e-petition (120,129 signatures) leading to Westminster Hall Debate and      establishment of Task and Finish Group  
  • 2018 Government announces £40 million and CRUK £25 million over five years for brain tumour research funding 
  • 2021 APPGBT Pathway to a Cure – breaking down the barriers Inquiry launched
  • 2022 Stop the Devastation petition report presented to PM Boris Johnson  
  • 2023 APPGBT inquiry report published - Pathway to a Cure 
  • 2023 First backbench business debate on brain tumours in the House of Commons  

After 12 years of working alongside Sue Farrington Smith MBE at Brain Tumour Research our professional relationship is about to enter a new dynamic.

Our personal relationship will remain the same though.

I have the most profound respect and admiration for Sue, who has achieved so much through passion, tenacity, drive and incredible hard work.

I owe her a huge debt of gratitude and so does the brain tumour community. 

Au revoir but not goodbye Sue. 

Brain Tumour Research is sad to learn that the NCRI – the National Cancer Research Institute – is to wind down.

The charity is proud to have been a partner of the organisation which, for the past 22 years, has worked to deliver better outcomes for all those affected by cancer throughout the UK and beyond.

Its brief included identifying and addressing gaps in cancer research and guarding against expensive and unnecessary duplication of effort and searching tirelessly for new ways and means to accelerate the progress of cancer research. 

In a letter to members, NCRI Chair Fiona Driscoll explained that, since its inception, the cancer research landscape had matured significantly, and it was proud that many of the original purposes of the NCRI had been achieved or taken over as business as usual by its partners. 

She added that uncertainty in the wider economic and research environment had had an impact and that a consultation with stakeholders had identified a compelling set of priorities but had raised signification questions around “the sustainability of NCRI’s operating and funding model, which we have not been able to resolve in such a way which would deliver long term viability for the organisation.” 

This is a sad loss to the cancer world and our thoughts are with the workforce who will be affected by this announcement. 

The charity has placed great value on being an NCRI partner and contributing to the valuable vital work it has done in helping to influence strategy, avoid duplication, foster an understanding of the work other charities are undertaking and in bringing together the cancer community. 

We look forward to learning more about how this important work will be undertaken in the future in order to give an equal voice to all partners and provide transparency around the national investment in brain tumour research.

Brain Tumour Research campaigner Liam Bergin has died after a three-year battle with a glioblastoma (GBM).

Liam, 52, from Bollington, Cheshire, was in otherwise good health when, out of the blue, he was diagnosed in April 2020.

He was given a prognosis of a year to 18 months.

He died on 26th June.

In a tribute on Twitter, his family said: “Father, husband, son, brother, friend, fundraiser, campaigner, counsellor, wine merchant, caterer, and general heart on his sleeve good guy, Liam Bergin has passed away this morning 26th June, aged 52 of a brain tumour three years after his initial diagnosis. Since his diagnosis he has fundraised tirelessly for research into this awful disease and found a whole network of new friends and supporters on the way. So many people will miss him, so many will remember him.  

“Liam's life has never been straightforward and the last five years have been particularly tough, but he has always strived to make things better, to sort things out, to find solutions. He has lived his life like a tornado for the last 52 years and will continue to help people through being a donor after his death.  

“Liam's parents imbued in him the centre left values of social justice and looking after others. Sometimes he and we get that wrong, but we keep trying and we always will. His children, his wife and his family will miss him desperately.  

“So, raise a glass of beer, or wine, or coffee or any of the beverages that he worked with over the years to Liam Bergin.

And in the words of his beloved Billy Bragg, 'We offer up to you this tribute, we offer up to you this Tank Park Salute’.”  

Liam, who was married to Jen, and dad to Joe, 20, Catlin, 18, and Esme, 16, documented his journey in a blog.

He raised £45,000 for Brain Tumour Research through a variety of fundraising initiatives, such as a coast-to-coast bike ride from Whitehaven to Newcastle and a 100-mile tandem ride with Joe.   

In March 2022, Liam and Joe visited the Brain Tumour Research Centre of Excellence at Queen Mary University of London (QMUL).

They placed nine tiles on the Wall of Hope, dedicating them to young people who have lost their lives to brain tumours.   

Liam and Joe at the QMUL Wall of Hope 

Liam was told there were no more treatment options left for him in April 2023.  

This week also saw the death of Margaret McDonagh – a giant figure in the Labour Party, her plight was bought to life by her sister Siobhain in the recent brain tumour debate at Westminster.  

Our sincerest condolences to both families and to all families who have suffered brain tumour loss.  

Hope and optimism in Vienna, despair in London and Manchester. 

In the spirit of the Brain Tumour Advocate summit, we strive to build progress and build hope, but we won’t forget those who drive us on and in their legacy, we will achieve our vision – a cure for all types of brain tumours. 

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