On Wednesday we were able to talk with Health Minister Will Quince. We have mentioned before that the issue of brain tumour research is one that has consistently been coming across his desk during his time in office. He certainly was well briefed for our meeting and on top of that his keenness to move forward in our disease area was very apparent.
We are very aware that you, our community are desperate for us to move forward as quickly as possible and that this could be viewed as ‘just another meeting’ but we are confident that as the meetings become more focused and the actions coming away from these meetings more direct that we are on the right path and that the minister’s ambition, as stated on Wednesday “huge keenness & willingness to get more funding allocated to brain tumour research” will show some fruition soon.
Minister Quince ended the meeting by saying: “This is a priority for me. I support you in this. Let’s crack on and see what's possible.”
This meeting was organised by Lord Hunt of King’s Heath and we are hugely grateful to him for his continued support for Brain Tumour Research.
This support began with Lord Hunt being contacted by one of our most loyal, active, and tenacious campaigners.
Things are pretty tough for this campaigner at the moment, but we want them to know we remember all they have done with us and thank them for this connection and the difference it is making.
As mentioned in an update a fortnight ago Will Quince met with the family of Amani Liaquat who are great campaigners too (that meeting was remarked on in our meeting on Wednesday) and they were raising awareness again this week; they are photographed here with their MP and All-Party Parliamentary Group on Brain Tumours (APPGBT) Officer Sarah Owen with London Mayor Sadiq Khan.
Yasmin Stannard, Sarah Owen and Sadiq Khan
Yasmin and husband Khuram will be talking about Amani to the APPGBT on Tuesday at Westminster and alongside them will be Amani’s clinical team, Anup, Tom, and Tanya.
All three were at this week’s meeting of the British Neuro-Oncology Society (BNOS) in Manchester. We met them there to discuss Tuesday’s meeting.
The meeting was also an opportunity for us to ask the society to consider becoming more politically active and to support us in our push for change. I gave a presentation on our campaigning work and the work of the APPGBT to a receptive audience.
Brain Tumour Research at BNOS
Also, at BNOS the Young Investigator Award 2023, co-sponsored by Brain Tumour Research, winner was announced as Tim Ritzmann.
The award, which recognises an early-career researcher who has made an outstanding contribution to the field of neuro-oncology in the UK, has been given to Tim for his work on ependymoma.
Tim is a National Institute of Health and Care Research (NIHR) Academic Clinical Lecturer in Paediatric Oncology at the University of Nottingham, where he and his colleagues are working to understand the underlying biology of paediatric ependymoma.
He said: “It is a real honour to be awarded BNOS Young Investigator of the Year 2023. Whilst it is personally very humbling to be recognised in this way, it is important to remember that research is a team endeavour, and that none of this would have been possible without the support of both my clinical and academic colleagues in Nottingham and collaborators across the world. In a time when increasingly specific and rare brain tumour diagnoses are being made, the scientific progress we need can only be achieved through working together across international borders.”
Ependymoma is the second most common high-grade brain tumour of childhood. It is an aggressive tumour which has its worst impact on the youngest children. For several decades there have been no significant leaps in improvement of standard of care therapy.
The therapies that we currently use are not effective enough in delivering cures, particularly when the tumour relapses.
The current therapies also risk damaging the developing childhood brain.
Tim is not only investigating how areas within the same tumour are different to one another in order to identify targets for treatment, he is also working on the current SIOP Ependymoma II clinical trial, which aims to improve the accuracy of the primary diagnosis of ependymoma and define the most appropriate therapeutic strategies in children, adolescents, and young adults with ependymoma.
Tim Ritzmann (centre) receives his award from BNOS President Paul Grundy alongside Dr Karen Noble
As well as receiving this prestigious honour, Tim receives an award of £2,000 to attend one (or more) other neuro-oncology conferences.
The work being conducted by Dr Tim Ritzmann on ependymomas is extremely exciting and we are proud to be able to support him with the Young Investigator Award.
The Tessa Jowell Brain Cancer Mission has announced the appointment of the two first fellows to its inaugural Tessa Jowell Fellowship programme.
Dr Morag Brothwell and Dr Sean Main will complete a 12-month programme of high-quality training in neuro-oncology clinical practice and research. The new fellows will be hosted at two Tessa Jowell Centres of Excellence: King’s Health Partners and University College London Hospital.
The programme will train these highly skilled clinicians to appreciate the breadth of comprehensive brain tumour management and equip them with the research skills to lead high impact, practice-changing neuro-oncology clinical trials of the future.
The Fellowship programme, led by the Tessa Jowell Brain Cancer Mission, is co-funded by the National Institute for Health and Care Research (NIHR) and the Tessa Jowell Foundation (TJF).
Dr Nicky Huskens, Chief Executive Officer of the Tessa Jowell Brain Cancer Mission, said: “We are delighted to welcome two fellows to the Tessa Jowell Fellowship programme. Through the training and research they plan to undertake, they will make a positive contribution to the thriving brain tumour research efforts in the UK and support patients affected by this devastating disease.”
Dr Nicky Huskens pictured at BNOS with Dr Karen Noble
By combining its resources and expertise with those of the NIHR and charity sector, the Mission hopes to address workforce and skills shortages in the brain tumour field.
It is hoped that the fellowship programme will expand to include fellows from other specialties including neuroradiologists, pathologists and allied health professionals in future rounds.
Dr Karen Noble, our Director of Research, Policy and Innovation, said: “Our congratulations to Dr Brothwell and Dr Main on their appointment as fellows, and to the Mission on this exciting initiative. We look forward to seeing how the programme helps to attract top talent and drive innovation in brain cancer treatment and research, and how it complements the work we are doing to build capacity and increase investment in brain tumour research in the UK in order to improve outcomes and, ultimately, find a cure.”
Nicola Nuttall whose daughter Laura died in May, aged just 23, has called for a number of improvements in care, including genome sequencing of brain tumours and more information for those affected by the disease.
She is backing a new report that calls for whole genome sequencing for everybody that has a brain tumour removed in surgery.
“When that tumour is removed the actual tissue that’s removed is like gold dust,” she said;
“You can use it for genomic sequencing so you can identify exactly what that tumour was made up of and in the long term that gives (scientists) the option of using frozen tissue to make a vaccine which is looking like quite promising treatments for glioblastoma. So it’s really important that something that could be seen as just medical waste is actually treated properly and used as a resource going forward and once we know what the mutations are, then there’s the option to develop novel drug treatments. “
Nicola Nuttall pictured at BNOS with our Co-Founder and Trustee Sue Farrington Smith MBE
She said that she will keep campaigning because “Laura would be expecting us to continue the fight.” For more information visit: https://www.ourbrainbank.org/use-your-brains/
For Brain Tumour Research this week has been all about talking to ministers, clinicians, scientists and families and we all have our own vision of a cure for brain tumours.
With so many stakeholders, we will always remember that at the centre of our mission remains the brain tumour patient – to neglect that would be at our peril.
It has informed all that we do and as we stride forward into a new leadership era it will continue to do so.
It always will – thank you for standing alongside us.