In my brief update – that wasn’t really an update – last week, I mentioned it being a new term.

It will be a short lived one at Westminster as MPs will go into recess again next week as they head off for their party conferences– you can expect updates from the conferences by Thomas in the coming weeks.

However, the ‘new’ news is that we have announced the appointment of Dan Knowles as our new Chief Executive

Dan, who has lost three family friends to brain tumours in the last two years, said:

“I am excited to bring everything I have learnt both in the corporate and third sector to this wonderful organisation.

“Brain Tumour Research has achieved so much, and we have much more to do.

“There has never been a better or more important time to seek greater awareness, funding, and research.

“ I look forward to playing my part in grasping the opportunity to make a step change in the coming years in terms of advancements in our understanding of brain tumours, bringing forward new treatments and, ultimately, finding a cure.”   

Read more on this exciting progression for our charity here. 

In other exciting news an enormous milestone has been reached as Brain Tumour Research has opened its fourth Centre of Excellence on the Sutton campus of The Institute of Cancer Research (ICR), London.  

Under the leadership of Professor Chris Jones (pictured), the new Centre will focus on identifying new treatments for paediatric-type diffuse high-grade glioma brain tumours in children and young adults, a collection of deadly tumours which include diffuse midline glioma (DMG), such as diffuse intrinsic pontine glioma (DIPG).

These types of tumours have a devastatingly short average survival of just nine to 12 months. 

The Centre will act as a crucial bridge connecting worldwide research and analysing findings which will help inform and enable the setting up of much-needed clinical trials.  

Read more on this, and the extraordinary act of generosity that helped us bring this centre collaboration forward, here. 

The Less Survivable Cancers Taskforce, of whom we are a registered supporter, have launched a new survey to gain a greater understanding of the experiences of people who have a less survivable cancer and who receive palliative care.   

The survey aims to provide insights so they can lobby for improvements to palliative care services, and to highlight any good practice.  This survey aims to provide statistical and anecdotal evidence to identify areas of improvement and there will be a resultant short report on the anonymised findings.   

• The survey is here: Palliative Care Survey | Less Survivable Cancers Taskforce (qualtrics.com) 
  

• A blog giving more details and linking to the survey is here: Patients given voice on palliative care - Less Survivable Cancers Taskforce 
  

Brain Tumour Research welcomes last week’s announcement that the UK is to join Horizon Europe – the world’s largest collaborative research programme. 

Over the past year, Brain Tumour Research has campaigned for UK collaboration in the Horizon Europe scheme.

In conversations with Ministers and Shadow Ministers across the UK, we have stressed the importance of the Horizon Europe association and have urged the Government to formalise access to Horizon Europe.  

UK researchers are now able to apply for grants and bid to take part in projects under the programme, with certainty that the UK will be participating as a fully associated member for the remaining life of the programme to 2027.  

You can read more on our reaction to this positive news here. 

With this news from the Government, it is worth noting that in the recent Labour Party reshuffle, Peter Kyle MP was announced as the new Shadow Secretary of State for Science, Innovation and Technology.

This is a new role in the Shadow Cabinet, mirroring the role created as part of the Prime Minister's new Department for Science, Innovation and Technology. 

Chi Onwurah MP remains Shadow Minister for Science, Research and Innovation.

We look forward to engagement with both and making sure that brain tumour research funding is on their agenda.  

One of the things that we know leads to despair in brain tumour patients and their families and real concern in politicians is the need for some patients to research, access and self-fund treatments overseas when there are no further treatment options to explore in the UK.  

It isn’t just a UK issue though.  

If you get an opportunity, please listen to this piece from Canadian radio – which I was pleased to contribute to – which tells the story of 30-year-old Aisha Uduman who was diagnosed with a rare form of brain cancer and told her life expectancy was less than a year.

She and her family wanted more than the treatment plan her Canadian doctors provided, so they headed to Germany. 

Consider too this recent post that I read on LinkedIn from a US West Coast Neurooncologist and Medical Oncologist:

“It’s almost a tragedy that drugs that work are kept inaccessible to patients because of FDA (Food and Drug Administration) and it’s overzealousness, including for ONC201 for an otherwise virtually untreatable brain tumor, which demonstrated remarkable clinical effectiveness two years ago for DIPG, the pontine glioma that affects both children and adults. Please, take a moment and sign your support for this incredibly important bill that would end the era of having to travel to Germany to get the drug under a much more rational regulatory system.

“Mr Biden are you listening?”

The call to action is for campaigners to write to US Senators asking them to sign this bill:  The Promising Pathway Act: Reintroduced in Congress on June 8, 2023 

At Brain Tumour Research our current call to action is to sign the #BrainTumour Petition which will soon pass 43,000 signatures. 

Antiques Roadshow expert, Theo Burrell (pictured), a specialist in fine furniture and decorative arts at Lyon & Turnbull Auctioneers in Edinburgh, was diagnosed with a glioblastoma in June 2022, aged 35.

Theo is backing our call for increased Government funding into brain tumour research.

Find out more about it here. 

If you have a keen interest in the future of cancer research, I recommend watching this week’s meeting of the Health Select Committee inquiry into future cancer held on Thursday morning where the opportunities and barriers to translational research, the state of UK clinical trials and how to better involve industry were explored at a granular level. 

This all demonstrates how vital UK based research is and this week Brain Tumour Research was delighted to announce it is working in partnership with the Medical Research Council (MRC) to fund ground-breaking research at Cardiff University, Wales.  (This ‘sandpit’ was mentioned in the debate noted above.)  

A project award of £500,000 will see Dr Ben Newland at the School of Pharmacy and Pharmaceutical Sciences at Cardiff University, Wales, and colleagues from universities throughout the UK, working to develop an innovative surgically implanted, drug-delivery system that represents a “paradigm shift” in treatment for glioblastoma.  

The grant is our first partnership with the MRC, and the charity's first major investment in Wales.

It is part of a £2 million cash injection announced this week by the Department of Science, Innovation and Technology.

Read more on this story here. 

We want to keep you updated and informed on the exciting developments happening with diagnosis and treatment of brain tumours.

Therefore, to complement our technical Worldwide Research News published each Saturday, we publish blog pieces that delve into recent developments and provide a more in-depth explanation of what scientists are trying to achieve and how the research may go on to benefit patients. 

Most recently we have looked at a recent Phase III clinical trial where a vaccine known as DCVax®-L was reported to extend the life of patients with glioblastoma.

This week I have been at a meeting of the British Society of Neurosurgeons (SBNS). I have been working to make sure that our new edition of Believe is placed in all UK neuro centres so patients and families are aware of our research and campaigning activities.  

I’ve also been talking to the President of the society about him giving a talk to the APPG on Brain Tumours (APPGBT) about recent surgical developments. 

The next meeting of the APPGBT will be in November (more details to follow) but the rules around the makeup of APPGs have changed over the summer and we need to demonstrate that we, as an APPG, have a core membership of at least 20 Parliamentarians. 

As the secretariat we firmly believe that we can reach that threshold but if any of you have received communications from your MPs, perhaps as replies to your invites to them to join previous APPGBT meetings, that they are keen or willing to engage with the APPG then this is the time to hold them to that. 

Email me hugh@braintumourrersearch.org with the name of the MP and I’ll check in with them to make sure that they are true to their word.

So, as we promised we return this week with a bumper update, but we have plans to make these updates more compact, more visual and easier to read on whatever device you are using. 

Your loyalty and support for this update over the past three and a half years since I started writing it has been truly appreciated and your kind comments really do mean so much. 

We will continue what we are doing and reporting back to you, the brain tumour community.  

Thank you for what you have done, are doing and will do to make a difference for brain tumour patients. 

There will be another update from me next Friday

Wishing you all a peaceful time until then

Hugh