Brain tumours kill more children and adults under the age of 40 than any other cancer
Hats, Horses and Crowns
It was a great thrill to be at Newmarket Races on Coronation Day to support our wonderful partnership with the British Hat Guild (BHG) and The Jockey Club.
It was a fantastic opportunity to speak on BBC radio and to racegoers about Crowning Glory: A Milliners’ Celebration of All The King’s Colours which features 22 hats by some of the biggest names in UK millinery. Members of The British Hat Guild have generously created these bespoke pieces which are being auctioned to raise funds for Brain Tumour Research.
We’ve also had support from some big names from the world of showbiz and horse racing who kindly gave their time to help us promote the auction.
TV racing presenter and former jockey Leonna Mayor showcased some stunning hats, including this statement piece called Seville.
Made by Rafa Peinador its distinctive design in red, black and gold, and was inspired by the riders and ladies dressed for the April fair in Seville
The hats are one-off pieces which hold a retail value of between £350 and £2,000 and all are fashioned in combinations of scarlet, purple, black and gold, the colours of the royal racing silks, to celebrate the Coronation.
Chairman of The British Hat Guild Stephen Jones OBE is a high-profile supporter of Brain Tumour Research following the loss of his friend, the pioneering fashion stylist Dizzy Downes, to a brain tumour in 2006.
Stephen said: “It is an honour for our Guild to be involved in this prestigious exhibition to raise funds for Brain Tumour Research. We are delighted to be able to use our millinery skills to support such a fantastic charity.”
Actress Vicki Michelle MBE is currently on our screens starring in EastEnders.
She has a close connection to the disease as her sister has only recently undergone surgery for glioblastoma.
At a London photoshoot Vicki modelled a royal red hat by Beverley Edmondson called Ruby
Find out more and maybe place a bid here
As well as this time of year being the peak time for the flat racing season with the Epsom Derby and Royal Ascot just around the corner with milliners scurrying from client to course, members of the British Hat Guild, for whom we are proud to be their ongoing charity of choice, were much in evidence at the Coronation too.
The First Lady of the US Jill Biden wore a hat by Stephen Jones, (the Biden’s connection to brain tumours is well known following the death of the President’s son Beau to a GBM).
BHG member Jane Taylor made the hat worn by Penny Mordaunt (who co-incidentally has supported brain tumour research at Westminster events and has visited one of our research centres).
Then there was the role of our patron, and one of only two milliners to have inspired one of our famous signature brooches twice (the other being royal milliner Rachel Trevor Morgan), Philip Treacy, who said his role in Saturday’s coronation, making the velvet, fur-trimmed caps that lined King Charles and Queen Camilla’s crowns was “the greatest honour of my career”.
The cap of maintenance for all three crowns - St Edward’s Coronation crown, The Imperial State crown and Queen Mary’s crown were made by Philip and his team at his studio at 69 Elizabeth Street in London. As Philip wrote on his Instagram page “What a privilege to work with The Crowns of England. One thousand years of History. The ultimate Hats!”
We are proud of our Wear A Hat Day campaign – it is the UK’s premier brain tumour awareness campaign.
Not only is it supported from the catwalk to the playground but it delivers wonderful partnerships like these ones with the British Hat Guild and The Jockey Club.
Brain Tumour Research has published its Annual Report and Financial Statements for the year ended 30th June 2022.
The report examines the charity’s achievements and performance in research at its Brain Tumour Research Centres of Excellence, campaigning and awareness-raising, and fundraising during the period 1st July 2021 to 30th June 2022.
It is published after the charity delivered its best year yet, building on the success of the previous year, with income of £7.5 million, up 40% on 2020-21.
Key achievements are summarised including delivering a surplus of £1.4 million and closing reserves of £2.5 million enabling us to launch a call for applications for a fourth Centre of Excellence.
The report highlights how our campaigning has gone from strength-to-strength with our message about joined-up thinking across Government funders getting through and highlights our work in leading the All-Party Parliamentary Group on Brain Tumours (APPGBT) Inquiry. It spotlights the inspiring efforts of our ever-growing base of loyal supporters and their committed fundraising, awareness-raising and campaigning efforts.
The report also explains numerous publications from our Research Centres at Imperial College, London; Queen Mary University of London; and the University of Plymouth, which bring hope for the future, and the initiation of two key partnerships to achieve our research aims.
Read the full Annual Report on our website here.
We read this recent press item with great interest: UK partnerships with life sciences groups threatened by NHS pressures.
It notes a sharp decline in UK - based clinical trials since 2019 and access to trials was the basis of the following recommendation in the APPGBT report ‘Pathway to a Cure which said:
“There are a limited number of clinical trials available for brain tumour patients and the national trials database is not reliable. Government should ensure equity of access to clinical trials and that the clinical trial database is robust and up to date. “
Furthermore, the report used a patient survey conducted by Brain Tumour Research to report that 72% of patients or patient families that responded would consider participating in a research or clinical trial. However only 21% believed healthcare professionals gave sufficient information about opportunities to participate in clinical research, including trials, with only 12% taking part in a trial.
With that in mind it is good to balance this with positive news of two trials.
Firstly researchers at Northwestern University in Illinois believe they are a step closer to finding an effective treatment for GBM thanks to results from a trial using a low-intensity ultrasound technique.
The ultrasound device implanted in the skull uses tiny bubbles to open the blood-brain barrier to deliver drugs to the brain to treat GBM.
The blood-brain barrier is a network of blood vessels and cells that protects the brain from toxins and infection, however it also makes it hard for chemotherapy drugs to reach brain tumour cells, making the disease difficult to treat.
As part of the phase 1 clinical trial, 17 glioblastoma patients had the ultrasound device implanted in their skull. A few weeks later, they began treatment with common chemotherapy drugs carboplatin and paclitaxel.
For the first time, scientists have been able to quantify the concentrations of chemotherapy drug in the human brain after the device was used to temporarily open the blood-brain barrier. Researchers found that opening the barrier led to a four to six-fold increase in drug concentrations in the human brain. They also noted that the barrier restoration happens in the first 30 to 60 minutes after sonication.
Dr Karen Noble, our Director of Research, Policy, and Innovation, said: “The results from this trial sound hugely encouraging. To be able to open the barrier with the patient awake, and for them to be able to go home after a few hours, could be totally game-changing. Being able to effectively cross the blood-brain barrier with new and existing drugs could lead to a revolution in care for brain tumours and for other neurological conditions.”
We were pleased that The Sun came to us for comment on this promising development
Secondly a clinical trial of an oral spray containing cannabinoids to treat GBM has opened at Leeds Teaching Hospitals NHS Trust and the Christie NHS Foundation Trust in Manchester.
The trial, funded by The Brain Tumour Charity, will investigate whether combining nabiximols (a cannabis medicine) and chemotherapy can help extend the lives of people diagnosed with recurrent GBM. It will recruit more than 230 GBM patients at 14 NHS hospitals across England, Scotland and Wales in 2023.
With so much going on in the brain tumour world it is a really good idea to keep up to date by reading ‘Believe’ the news magazine for brain tumour activists.
The Summer 2023 issue of Believe magazine is coming soon, including exciting research news, campaigning updates and inspiring stories from the brain tumour community.
To receive your copy in the post, complete this form and opt-in to postal communication from us. If you’d like to receive a box of 100 copies to distribute in your community to help raise awareness, include ‘Box of Believe’ in the message box.
One thing activists do is sign petitions and I make no apologies for mentioning our current #braintumourpetition again this week.
Why have we introduced another petition?
The 2020/21 petition which called for increased national investment into brain tumour research to £35 million a year closed at the end of February 2021.
Following the amazing support of more than 112,000 signatories, we produced our Level Up and Stop the Devastation Petition Report which called on the Government to:
- Introduce a new levelling up brain tumour research fund of £105 million
- Increase the national investment into brain tumour research to £35 million a year
- Demonstrate joined-up thinking for investment across the brain tumour research pipeline
In March 2021 at Prime Minister’s Questions (PMQs), Derek Thomas MP, Chair of the All-Party Parliamentary Group on Brain Tumours (APPGBT) asked the Prime Minister (Boris Johnson) if he would meet with him and receive the report.
This meeting took place in July 2021
That political momentum continued with the APPGBT report ‘Pathway to a Cure – breaking down the barriers’ launched at Westminster on 28th February 2023 followed up on March 9th with a backbench business debate in the main chamber plus a question was raised at PMQs with the upshot being that ministerial meetings are now in the pipeline.
It was an earlier petition of ours that resulted in a Westminster Hall debate in April 2016 and at that debate the formation of a working group to investigate brain tumour research funding was announced. The resultant report was a prime factor in the allocation in 2018 of £40 million for deployment to brain tumour researchers and clinicians.
Two petitions from Brain Tumour Research in the past seven years have gained huge progress and raised political momentum.
What hasn’t changed over this time though is the number of people and families affected by brain tumours.
People unwillingly thrown into our community need a beacon of light, some hope, and some positive action that they can take during a period of anxiety and anguish.
A petition is a way of providing them with that.
For those of us who have campaigned for many years it is a way to continue to hold politicians to account and to keep our profile high. For those newer to the community, it may be the first petition they have ever signed, but it will be a positive step and the first one on the road to becoming a brain tumour activist.
So whilst our longer standing supporters and activists may have signed a previous petition and followed our course through to our current position – and we do hope that you’ll continue signing these petitions of course - we are also admitting new campaigners and as our number grows our voice is amplified.
To paraphrase our campaigning mantra that people cannot support a cause unless they know it exists, then people cannot sign a petition unless they know where to sign and the more people that know where to sign then the more people will do just that.
Please sign and share far and wide.
It has never been easier – use social media, ask friends and family to share as a special favour to you, try to engage your favourite celebrity, get your workplace involved. If each of you receiving this can influence just 75 other people to take a couple of minutes to sign the petition, then we will surge past our 100,000 target with ease.
Next week we’ll have news on the brain tumour debate in the Senedd (and thank you all for the support in asking your MS to attend) plus hopefully an important answer to a recently posed Parliamentary question and what happened at Tuesday’s roundtable organised by the Tessa Jowell Brain Cancer Mission.