Brain Cancer Justice

06/11/2026

LIVING IN LIMBO: Lizzie was diagnosed last year, following a seizure. She had brain surgery in April 2025 followed by the standard of care: chemo and radio.

However, now Lizzie is facing a recurrent challenge. Only two weeks ago she found out her original Glioblastoma had grown. She is now seeking potential approaches, a second opinion and clinical trials. However, there is a lack of clarity around the next approach and Lizzie is scared to make the wrong decision.

Lizzie needs answers – what next steps should she take – but our current system has not delivered.

Lizzie, alongside Max and other recurrent patients, are living in limbo.

This has got to change.

We are looking to the new to understand the daily challenges facing brain cancer patients and the desperate need for fundamental change.



James Frith MP Andy Burnham Department of Health and Social Care - DHSC Yvette Cooper

04/11/2026

Huge impact Braelyn and Amanda are having - yesterday in HoL, today in PMQ’s when Sharon Hodgson MP spoke about Braelyn’s journey from the US to London to access DC Vax manufactured here in the UK. Sharon Hodgson: “it is the first treatment in decades that has been shown to extend survival in recurrent Glioblastoma patients yet it is only available to a tiny number of patients on a compassionate use basis… and agree we should help get this into widespread use to save lives”

A positive response from the minister then followed. We look forward to hearing more from Yvette Cooper.


braelyn Amanda Hollensbe Andy Burnham

02/11/2026

WE CAN NO LONGER LIVE IN LIMBO

Braelyn is an example of reaching out across the world to access the trials and treatment that you desperately need but aren't yet offered by your own healthcare system.

That fact that Braelyn has headed to the UK is an example in itself - demonstrating value sits here in the UK but has been inaccessible unless you have the funds to support you.

Braelyn has been battling her diffuse hemispheric glioma for three years - she is now 19. We need to give our future more than hope - we need to give them treatment - not in a decade’s time but right now.

Let's stop leaving our children, our patients, in limbo, waiting to hear more, let's open doors, reduce the barriers and collaborate.

31/10/2026

It’s Halloween so the Brain Cancer Justice banshee is back! She was asking for all brain cancer patients - why are we living in limbo?

Will this banshee survive? Under the current system there is absolutely NO chance she will.

‘Progress’ is on its way but ‘agility’ ‘speed’ and ‘collaboration’ must join ‘progress’ so we see change now!

30/10/2026

LIVING IN LIMBO: In February 2025, Max was diagnosed with a Grade 4 Astrocytoma, following a seizure at home. He was given brain surgery in April that year, followed by 6 weeks of Radiotherapy and Chemotherapy, followed by 12 gruelling months of chemotherapy and a drug trial, Vorasidenib. His trial was being led by “the amazing team at The Royal Marsden in Sutton”.

However, now he is facing a recurrent challenge. On 1st September 2026, he found out his original tumour had grown. He has been told about potential approaches: surgery, more chemo, radiotherapy or all three – but there has been no clarity around the right approach. It has been over 2½ months since his MRI scan was conducted – and yet no action – he has been left ‘waiting to hear more’ from his clinical team on 4th November. This will be 80 days on from his MRI scan in August.

Max needs answers – what next steps should he take – but our current system has not delivered.

Max, alongside other recurrent patients, is living in limbo.

This has got to change.

We are looking to the new to understand the daily challenges facing brain cancer patients and the desperate need for fundamental change.



National Institute for Health and Care Excellence Andy Burnham
James Frith MP Department of Health and Social Care - DHSC

29/10/2026

Have a read:

https://www.linkedin.com/posts/nuvationbio

We're thrilled to announce that our pivotal Phase 3 SIGMA study of our investigational therapy for IDH1-mutant glioma will expand to include study sites in the United Kingdom, France, Sweden, Germany, Italy and Spain. These additional countries extend SIGMA’s global footprint beyond the U.S., Aust...

28/10/2026

An interesting read…

What does it take to access experimental brain tumour treatments that challenge the standard of care?

26/10/2026

No pressure Archie!

Edinburgh swimmer and campaigner Archie Goodburn to deliver match ball at Scotland v Australia