Exciting times for campaigners ahead as the General Election has been announced for Thursday 4th July.
At this time, we have a great opportunity to come together as the Brain Tumour Research community and use our collective voice to draw attention to the issues that matter to us namely the need to do things differently if we are to improve options and outcomes for UK brain tumour patients.
This is not about party politics, but making sure those who want to represent us in the next Parliament hear loud and clear that their constituents want action on the biggest cancer killer of children and adults under the age of 40.
We are calling for our campaigners and our supporters keen to campaign for change to be ready to contact their Prospective Parliamentary Candidates (PPCs) and canvas their support for the commitments as set out in our ‘It Is Time To Do Things Differently’ manifesto.
To provide support for our campaigners over the coming weeks we will soon be launching a page on our website dedicated to the General Election.
For now, please make sure that you have a copy of our manifesto by your door ready for when the PPCs come knocking.
Ask them to pledge their support for declaring brain tumours a clinical priority and get a photo of them with our manifesto.
Contact me hugh@braintumourresearch.org to get a copy of the manifesto posted to you, or you can download it, and remember to send us details of any PPCs who pledge support.
We look forward to working with them when they arrive at Westminster.
(Credit Pal Hansen www.palhansen.com)
This morning ( Friday) I was on BBC Breakfast talking about our campaigning work alongside multi-platinum selling recording artist and musical theatre star Alfie Boe OBE who we have announced as a new patron of our charity.
The star, who embarks on a solo UK tour later this month, was just 23 when he lost his father Alfred to the disease in 1997. Describing his father as “fun and gentle”, Alfie said he was “proud and honoured” to be working with the charity, with whom he wants to “help secure more investment from the Government” after “being appalled just 1% of the national spend on cancer research has been allocated to this devastating disease".
Alfie, who this week marked the 27th anniversary of his dad’s death, said: “I feel very proud to be a Patron of Brain Tumour Research, but it makes me angry that, in all this time, the situation for patients like Dad hasn’t really changed. I feel incredibly sad to think that families are still facing this awful diagnosis and, nearly 30 years later, there have been so few advances in treatment.
“There is no doubt in my mind that research into brain tumours should be a priority and I am ashamed to think that charities are having to do so much in this area. The Government should be doing so much more. On a personal level I am also doing this in memory of Dad, and I hope that, in sharing my story, it will help other people who are struggling to come to terms with loss and perhaps even bring them some comfort to know they are not alone.”
Alfred started having strong headaches and he experienced problems with his eyesight. He went for a check-up with his GP who was “very dismissive”, prescribing antibiotics for what he thought was flu. A week later, during an optician appointment, Alfred was told to go to hospital urgently for a brain scan because he thought he had suffered a stroke.
“The scan, which was to alter all of our lives forever, took place at Royal Preston Hospital,” said Alfie.
“The doctors explained Dad had a brain tumour, it was aggressive, inoperable and there was nothing they could do. It was a very intense, awful experience and I remember even to this day how Dad was so apologetic. It was crazy; he was the one who had been told this dreadful news and yet there he was saying sorry to us and feeling guilty because he was unwell.”
When Alfred left hospital, Alfie drove him to the family home in in Fleetwood, Lancashire, “taking great care to drive as smoothly as I could to avoid any potholes or drains, anything which would cause a jolt meaning Dad would be in pain from the enormous pressure in his head”.
Alfred spent the remainder of his life there until he died in Alfie’s arms, on 18 May 1997.
“At the time Dad was diagnosed, I was in my second year at the Royal College of Music and would study in London during the week and then come home every weekend to be with him,” said Alfie.
“Week after week I would see the decline, all the more stark to me as I was away for a few days and the changes were evident each time I was back. He was on a lot of morphine and, towards the end, he was unconscious for most of the time.”
On Thursday 30 May, Alfie kicks off his 18-date UK tour at the Regent Theatre in Ipswich. Brain Tumour Research’s fundraising team will be at his concerts in Salford, Aylesbury, Birmingham, and the final night at Blackpool Opera House on Friday 5 July. They will collect donations from concert goers which will help fund the charity in its work to find a cure for all types of brain tumour.
Alfie said: “It will always be a great regret that Dad never got to hear any of my records, to come to one of my concerts or to see me in Les Misérables. When I do shows with Michael Ball, I see the joy on his face when his dad is in the audience and how wonderful it is for them to share that experience. I wouldn’t begrudge them that for a minute, but I wish my dad and I could have had that. But my biggest regret is that Dad didn’t get to meet my children. My son is named after him just as I was.”
A question from APPGBT member Daisy Cooper was answered this week by Health Minister Stephenson. Ms Cooper asked;" with reference to the press notice entitled Major agreement to deliver new cancer vaccine trials, published on 5 July 2023, whether brain cancer patients will be given access to the treatments and therapies made available through that programme."
Mr Stephenson's response was that "The Government’s partnership with BioNTech aims to provide up to 10,000 United Kingdom patients with personalised immunotherapies by 2030. As well as cancer vaccines, BioNTech has several other classes of cancer therapy under development, such as engineered cell therapies and antibodies. We are not able to comment at this stage on the exact pipeline of clinical trials that BioNTech will go on to launch in the UK, over the coming years."
Next weekend will see the Oaks and Derby meetings at Epsom with Brain Tumour Research being very visible there through our wonderful partnerships with the British Hat Guild and The Jockey Club.
Supermodel, actress, entrepreneur and brain tumour survivor Caprice Bourret has put our Carnival of Colour hat auction firmly in the spotlight with a stunning photoshoot for Hello! magazine.
A Patron and long-time supporter of Brain Tumour Research, Caprice modelled several of the 15 haute couture headpieces at Epsom Racecourse, designed by a host of exceptional British-based milliners to raise money for vital research.
She told Hello!: “I rarely wear hats, but these are exceptionally gorgeous. They’ll look good on everyone.
“To be involved in the exclusive couture collection is a great idea to create awareness of the charity, which I’m so proud to be affiliated with, in a fun and glamourous way.”
The mum of 10-year-old twin boys, Jett and Jax, Caprice became a supporter following her shock meningioma diagnosis, and subsequent successful surgical intervention, in Spring 2017.
She added: “I’ve been a Patron for the past five years. I’ve not only donated a substantial amount of money, but I’ve fought to raise funds and awareness endlessly to find a cure for this horrible, horrible disease. People think brain tumours are rare, but actually, one in three people in the UK knows someone affected.”
As mentioned above the collection of hats, created in collaboration with The British Hat Guild and The Jockey Club to reflect a carnival theme, will be shown at the Betfair Derby Festival at Epsom Racecourse (31st May – 1st June). Designed by the likes of Stephen Jones OBE, Awon Golding and Vivien Sheriff, the exclusive one-off pieces are being auctioned online until 10th June.
Caprice said of her tumour: “I was very fortunate. But working with Brain Tumour Research, I have had relationships with a lot of people that had tumours that were cancerous. It is absolutely devastating. And I will keep on raising awareness, raising funds for this important charity and find a cure so we can save lives.”
The Carnival of Colour hat auction closes at 12pm on Monday 10th June. Click here to place your bids
A report in the Mail on Sunday last weekend, highlighted the plight of desperate families who turn to crowdfunding websites to raise hundreds of thousands of pounds, to take their children to medical centres, often in Germany, Mexico and the US.
The report featured the tragic case of seven-year-old Jasmine Freeman, who was diagnosed with a DIPG, also known as a diffuse midline glioma, after experiencing double vision in February 2023.
Jasmine’s father, Anthony, a Brain Tumour Research supporter from Berkshire, told the Mail on Sunday: “We were told that she likely only had 12 to 18 months even if she underwent radiotherapy. I refused to believe that there was simply nothing that they could do.”
The family raised £246,000 for overseas treatment but, sadly, Jasmine died in January 2024, less than a year after diagnosis.
Access to clinical trials is a key issue faced by brain tumour patients in the UK, with only 5% of patients entering the limited number of clinical trials available. Our 2024 Manifesto asks the Government to commit to increasing participation of adult and paediatric brain tumour patients in clinical trials. Our Director of Research, Policy and Innovation, Dr Karen Noble was quoted in the piece and said :
“We know of at least five families who last year were raising money to travel overseas. The numbers taking these last-chance options shames the UK.
“Of course parents will travel the four corners of the Earth to find hope, but this hope must be based on science and clinical evidence. Our position isn’t one of criticism of the families, it is one of complete understanding and outrage that this situation has been reached as the UK slides down the list of countries where clinical trials are being instigated.”
This week saw a meeting of the Northern Ireland Cancer Coalition ( above) – which is now made up of 32 members. Thomas (pictured) is our representative on the group.
Barbara Roulston Policy and Public Affairs Manager at Cancer Research UK (CRUK) said that the coalition was an opportunity to collaborate and give voice to the concerns we all share.
The Coalition held its first campaigning event, this week, advocating for the Legislative Motion, which will help ensure the age of sale of tobacco will apply in Northern Ireland.
The priorities will be:
- To be better linked-up, to be able to speak with a common voice.
- To provide better overall support with people living with cancer.
- To get the Cancer Strategy implemented and delivered.
Interim Chair Richard Sprott said: “The hard work begins now. It’s wonderful to have so many people involved. I really hope we do good things together in the weeks, months and years ahead.”
Last week, Thomas met with Lord Alf Dubs. Lord Dubs was impressed with the level of detail in Brain Tumour Research’s latest manifesto. He supported the development of capacity so that the brain tumour research community can more effectively deliver clinical studies, through investment in both people and infrastructure.
Finally this week to Wales; We met with the Wales Cancer Alliance welcoming two new members – Kidney Cancer UK and ALK Positive Lung Cancer (UK) - and planning for our meeting with the Cabinet Secretary for Health on 26th June.
We also followed up on our meeting with the Research and Development Department of Welsh Government.
Welsh Government, via Health and Care Research Wales, invests approximately £9m p.a. in supporting research infrastructure groups in Wales.
Cancer research investments within the infrastructure include:
- A clinical trials unit (Centre for Trials Research)
The Cancer research strategy for Wales (CReSt) (Strategy – Wales Cancer Research Centre) was published in July 2022 and outlines six priority research themes where there is a strong track record of research excellence and future opportunity in Wales.
These themes include:
- Precision & mechanistic oncology - In collaboration with the WCRC, the BRAIN Unit is developing novel research using brain tumour tissue and live tissue cultures to predict treatment response.
- Immuno-oncology - The BRAIN Unit are working with WCRC colleagues developing oncolytic virotherapies for Glioblastoma brain tumours to support the direct delivery of these virotherapies into the brain. They plan to support the first-in-human trials of therapies developed here in Wales (Virotherapies and Car-T Cell therapies (Cardiff University)) and antibody Drug Conjugates (Swansea University).
- Radiotherapy - Via a Health and Care Research Wales NHS Research Time award, Dr James Powell (Consultant Neuro-Oncologist, Velindre) is leading a research collaboration between Velindre and the Cardiff University Brain Research Imaging Centre (CUBRIC) to investigate the effects of radiotherapy treatment on neurocognitive function in patients with brain tumours. The research aims to evaluate early MRI biomarkers of response and toxicity to radiotherapy. Such biomarkers could then be applied to adapt radiotherapy treatments based on response.
- Cancer clinical trials - There are currently 10 related brain cancer research studies open and recruiting patients across Wales, a combination of both interventional and observational. The studies range from trials looking at the cause and molecular genetics of cancers, cancer treatments, such as radiotherapy and chemotherapy and cancer drugs and their reactions. Welsh patients were some of the first in the world to access the drug-radiation combination trial, known as PARADIGM 2. The trial is co-funded by Cancer Research UK and The Brain Tumour Charity and is part of CRUK’s ECMC Combinations Alliance and is run at Velindre Cancer Centre by Dr James Powell.
That is it for this week and we are pleased to have brought you some news from Wales and Northern Ireland this week. Our brilliant work in Scotland will continue too but we get the feeling that there will definitely be a Westminster focus to these updates for the next six weeks.
Our General Election website pages and assets will be in place next week and we will be posting video updates during the next six weeks to keep you updated on what we are up to and how we can work together.
Keep an eye on our social media platforms too.
Wishing you all a peaceful time until next Friday.