As we pass the halfway point of March, we’re sharing some highlights from what has been a busy and exciting Brain Tumour Awareness Month so far. And make sure you read to the end for an exciting update on a star’s support of Wear A Hat Day.
Brain Tumour Awareness Month got off to a great start with hundreds of you – our wonderful supporters – celebrities and members of this community helping to #ShineALight on this devastating disease. And our message even made it to the other side of the world, with candles being lit as far away as New South Wales, Australia. We shared an update about this new campaign, as well as other activity at the start of the month, on our blog. Read it here.
Following the launch of the All-Party Parliamentary Group on Brain Tumours (APPGBT) landmark Inquiry Report at Westminster (read more here) on Tuesday 28th February, there was a flurry of attention in the media, with supporters sharing their experiences in print, online, and on TV and radio. Amongst them were Louise and Matt Fox who spoke about their son George on Sky News.
The following week saw the first parliamentary debate on brain tumours in seven years. Brain tumour research funding was debated in the main chamber of the House of Commons with 15 MPs making moving contributions, speaking about their constituents’ experiences and, poignantly, Siobhan McDonagh MP shared her own sister’s story of being diagnosed with a glioblastoma (GBM).
MPs including Derek Thomas (top left) speaking during the debate
In the words of Derek Thomas MP, chair of the APPGBT, who opened and concluded this emotional and significant debate, we are “encouraged that the discussion does not end here and that the work will continue. It must, because far too many lives depend on it”.
We shared an in-depth update from the debate on our blog. Read it here.
On the day of the debate, we were pleased to show Derek his comment in an article in the Daily Express, which also shared two-year-old Orla Tuckwell’s story.
Credit: Daily Express
Two-year-old Orla was just 20 months when she was diagnosed with a medulloblastoma in September 2022. Biopsy results revealed it had an incredibly rare mutation, and Orla’s parents have been told by specialists they are unsure how best to treat her brain tumour, as they cannot find another case anywhere in Europe.
Orla in hospital
“New hope of cure for brain cancer patients” – that was the headline in this Tuesday’s (14th March) Daily Express as it shared the announcement of our fourth Brain Tumour Research Centre of Excellence which will be at The Institute of Cancer Research (ICR), Sutton, Surrey. The team, led by Professor Chris Jones, has ambitious plans to identify new treatments for deadliest of childhood cancers.
The ICR team with Prof Jones (centre)
As Dr. Karen Noble, our Director of Research, Policy and Innovation, said: “The announcement of our fourth Centre marks a major step towards our vision of finding a cure for all types of brain tumours.”
The article also highlighted Amani’s story. Amani was just 23 when she died from a glioblastoma (GBM) in February 2022. Her mum Yasmin Stannard shared some of her daughter’s powerful words from before her death:
“In a speech by Amani five months before she passed, she asked, ‘Why is the biggest cancer killer of children and adults under 40 being ignored? Does my life not matter? How many more young people have to be robbed of their future until something is done?’”
Credit: Daily Express
Under Prof Jones’s leadership, an experienced team at The ICR will lead the way in scientific research into paediatric-type diffuse high-grade glioma (PDHGG) brain tumours. PDHGG are a collection of high-grade glioma tumours which include diffuse intrinsic pontine glioma (DIPG) and paediatric glioblastoma (GBM). Median survival for the vast majority of these tumour types is just nine to 18 months.
Prof Jones said: “Our lab is working day in, day out to unravel the underlying biology of these dreadful tumours, and hopefully uncover new ways to attack them. This invaluable support from Brain Tumour Research will help to fuel new discoveries and pave the way to smarter, kinder treatments for children.”
This is welcome news for many affected by the disease, including the family of six-year-old Indie Thomas who say it “means everything” that Brain Tumour Research is funding this work.
Little Indie
Indie became sick, incontinent and unable to walk properly before an inoperable brain tumour was discovered in September 2021. Her mum Danielle said: “This announcement means the world to us. We can do unbelievable things in this day and age, but we haven’t found a cure for brain tumours. Children shouldn’t be losing their lives because of a lack of Government funding. Our whole world revolves around Indie’s tumour, so anything that can progress research into this devastating disease is so important.”
Indie with dad Danny, sister Talluah and mum Danielle
Indie is currently on chemotherapy, which “makes her poorly for days”.
Danielle added: “The tumour has stolen Indie’s childhood, she’s sat in bed being violently sick because of the treatment with not very much reward, and that really hurts. Our lives would be completely different if more research into this type of brain tumour had been done earlier.”
We look forward to sharing more about the research being undertaken across our network of Research Centres over the coming months.
Your continued support has got us here. Thank you for everything you have done.
What next?
Now we need you to help us keep the momentum. Wear A Hat Day takes place on Friday 31st March and you can help us make this year the biggest and hattiest yet!
The Wanted singer and Dancing on Ice star Siva Kaneswaran has thrown his hat into the ring to support us. Siva lost his bandmate Tom Parker to this devastating disease a year ago.
Siva wearing our iconic pink top hat
Will you join Siva and help us make a difference? Sign up to plan a hattastic event wherever you are or simply make a donation. Don’t forget to post a picture on social media on the day using #WearAHatDay
Find out more and register now at www.wearahatday.org
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