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The Brain Tumour Charity

@braintumourcharity.bsky.social

430 followers 580 following 81 posts

The world's leading brain tumour charity & the largest dedicated funder of research into brain tumours globally.

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The Brain Tumour Charity @braintumourcharity.bsky.social · Feb 4

We know the devastating impact receiving a brain tumour diagnosis can have, whether that be your own or a loved ones.

Our support covers a wide range of inclusive and accessible services for everyone affected by a brain tumour, whether it’s low or high grade, adult or child. bit.ly/4gqh4JG

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The Brain Tumour Charity @braintumourcharity.bsky.social · 1h

3/3 We want your help to shape our community-led response to NICE’s decision. By sharing your views in our 5-minute survey, we can ensure that The Community’s feeling towards this decision is heard loud and clear. Share your views: bit.ly/3W6lKNb

We need to hear from you: Help shape our response to NICE’s draft decision on vorasidenib

NICE has decided not to recommend vorasidenib for use on NHS. We need your help in turning their no into a yes. Find out how!

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The Brain Tumour Charity @braintumourcharity.bsky.social · 1h

2/3 However, this is only a draft decision—and there is still scope for parties to come together. 84% of all drugs appraised by NICE are eventually approved, even if they are not approved at draft decision. That gives us hope.

The Brain Tumour Charity @braintumourcharity.bsky.social · 1h

1/3 Today’s draft guidance by NICE to not recommend vorasidenib for use on the NHS is disappointing.

It highlights broader challenges of bringing new treatments to people affected by brain tumours — challenges that are made more urgent by the lack of existing options.

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The Brain Tumour Charity @braintumourcharity.bsky.social · 15d

Brain tumours are consistently falling through gaps in policy. As a proud member of the Wales Cancer Alliance, we've joined together to call on all parties in Wales to commit to implementing our recommendations to improve cancer care should they form the next Welsh Government.

See below for more.

Wales Cancer Alliance @walescanceralliance.org · 15d

📢 We've launched our 2025 manifesto!
Fixing the Foundations: Building a better future for cancer care in Wales.

Every year, around 19,500 people are diagnosed with cancer in Wales. We need bold action to deliver timely, compassionate, and world-class care.

What we're calling for⬇️

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The Brain Tumour Charity @braintumourcharity.bsky.social · Sep 3

Future Leader, @alvarezprado.bsky.social's research has revealed a protein that can inhibit glioblastoma cell growth and help the immune system attack the tumour. Ángel and his team are now evaluating different drugs that inhibit this protein, which could lead to new therapies.

bit.ly/3Vx9IvS

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The Brain Tumour Charity @braintumourcharity.bsky.social · Aug 27

We need a National Cancer Plan that rises to this challenge & delivers on the ambitions of our National Brain Tumour Strategy.

Only then will people with a brain tumour see the real change they deserve — today and for the f

The Brain Tumour Charity @braintumourcharity.bsky.social · Aug 27

Brain tumours are the biggest cancer killer of children & adults under 40. By 2040, we will see 178,000 more malignant cases.

That’s why we’re calling for a National Brain Tumour Strategy — a blueprint for faster diagnosis, better treatments & fairer care.

#NationalCancerPlan #OneCancerVoice

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The Brain Tumour Charity @braintumourcharity.bsky.social · Aug 27

We’re proud to stand with #OneCancerVoice today, joining 60+ charities to call on the UK Government for a bold, fully funded National Cancer Plan. It must meet six essential tests to truly improve the lives of people affected by cancer.

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The Brain Tumour Charity @braintumourcharity.bsky.social · Aug 13

Research funded by our Quality of Life award hopes to test whether SpoonieKids, based on the spoon theory, is effective and practical to help manage fatigue in children who are living with the effects of brain tumours. Find out more:
bit.ly/4ov64jD

The Brain Tumour Charity @braintumourcharity.bsky.social · Aug 6

This type of funding helps promising ideas succeed or fail faster. It’s about speeding up progress, avoiding dead ends, and making sure those affected by this devastating disease benefit from breakthroughs sooner. Find out more: bit.ly/45nV3HY

Announcing our first funding awards for translational research

Our new translational research projects aim to speed up the journey from lab discoveries to clinical treatment. Learn more here!

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The Brain Tumour Charity @braintumourcharity.bsky.social · Aug 6

Over 18 months, three pioneering projects will receive up to £400k to answer a critical question: Can this innovation move closer to the clinic – or is it time to stop and refocus?

The Brain Tumour Charity @braintumourcharity.bsky.social · Aug 6

Translational research is all about bridging the gap between discovery research and real-world treatment. This process can be costly and time-consuming, which is why most research fails. For the first time, we’re funding translational research for brain tumours to help change this.

The Brain Tumour Charity @braintumourcharity.bsky.social · Aug 6

What is translational research? (thread)🧵

Only 10% of all research breakthroughs in the laboratory actually make it through to viable treatments. In most cases, this is due to a lack of translational research. 👇

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The Brain Tumour Charity @braintumourcharity.bsky.social · Jul 23

On the London to Brighton bike ride, you're not just doing a 55-mile challenge. You're riding to pick up the pace of change for everyone affected by brain tumours every year.

Join our 2025 team for just £10 and cross the finish line on Sunday 14 Sept.

bit.ly/4kYeL2W

London to Brighton Cycle 2025

Join The Brain Tumour Charity team at the ultimate cycling challenge at L'Étape du Tour de France 2025!

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The Brain Tumour Charity @braintumourcharity.bsky.social · Jul 8

“Glynwen was looking down on every step of the way.”

To remember her and raise funds, Trefor, Glynwen’s husband, and Brenda, her friend, walked 127 miles in May, along the pilgrimage trail from Twywn to Aberdaron in North Wales. Read more: bit.ly/4nKeOlB

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The Brain Tumour Charity @braintumourcharity.bsky.social · Jun 19

We welcome this and will continue working with clinicians and policymakers in Scotland – and the rest of the UK – to help bring advances to patients more quickly.

bit.ly/3HM7RzS

‘Pioneering’ technology to be used on UK brain tumour patients in world-first

The scanner could be used to track brain cancer spread and lead to improved treatment for patients, researchers say

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The Brain Tumour Charity @braintumourcharity.bsky.social · Jun 19

New scanning technology, developed by
‪@uniofaberdeen.bsky.social‬, can detect subtle differences in tumour growth, without the need for injected dyes - a positive step for those diagnosed with GBM, an aggressive brain cancer.

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The Brain Tumour Charity @braintumourcharity.bsky.social · Jun 11

This Carers Week, we're shining a light on the inequalities unpaid carers face, from isolation to poor health. 💙 Find out what support you could be entitled to via the link in our bio. #CarersWeek #CaringAboutEquality

bit.ly/3FQbNyS

Support for carers

Learn more about the extensive support for carers that is available to you as a carer of someone with a brain tumour.

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The Brain Tumour Charity @braintumourcharity.bsky.social · Jun 11

You might not see yourself as a carer—just someone helping a loved one. But if you provide unpaid support to someone with a brain tumour, you are a carer—and you deserve support too.

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The Brain Tumour Charity @braintumourcharity.bsky.social · Jun 3

Yesterday, @clivejonesmp.bsky.social submitted an Early Day Motion calling for earlier brain tumour diagnosis, following the launch of our Exploring GP Access to Brain Scans report.

A big thank you to Clive and his office for supporting this important issue. Read the EDM: bit.ly/3FDqipC

Brain tumour diagnosis - Early Day Motions - UK Parliament

That this House recognises the urgent need to improve diagnostic pathways for brain tumours, the largest cancer killer of the under 40s; notes with concern the findings of The Brain Tumour Charity’s A...

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The Brain Tumour Charity @braintumourcharity.bsky.social · May 21

An ultra-rapid method of genetically diagnosing brain tumours has been developed, cutting the classification time from 6-8 weeks, to as little as two hours. This could remove the uncertainty that those face waiting weeks for their diagnosis and prognosis. Read more: bit.ly/3YU9Qbb

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The Brain Tumour Charity @braintumourcharity.bsky.social · May 1

It’s clear we need better, clearer guidance for GPs. Read the full findings and our recommendations to improve diagnosis here: bit.ly/3GMgauQ

Exploring GP Access to Brain Scans

Learn how better access to brain scans for GPs can lead to quicker brain tumour diagnosis. Discover the new report details.

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The Brain Tumour Charity @braintumourcharity.bsky.social · May 1

This lack of awareness is a major barrier to faster brain tumour diagnoses, leaving many to wait longer for the care they need.

Current cancer pathways aren’t meeting the needs of the brain tumour community.

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The Brain Tumour Charity @braintumourcharity.bsky.social · May 1

Our new report reveals a third of respondents didn’t know they could directly request brain scans for suspected brain tumours. Even among those who did, many weren’t clear on how to use this guidance. 🧵

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The Brain Tumour Charity @braintumourcharity.bsky.social · Apr 4

After his glioblastoma diagnosis, John took on Everest in the Alps, climbing Everest’s height on skis with his daughter Belle, raising £300K for research into childhood brain tumours. Watch Belle share their story.

bit.ly/429wqi5

Everest in the Alps: The height of fundraising

Read about Everest in the Alps and the emotional journey of a father and daughter raising funds for brain tumour research.

www.thebraintumourcharity.org

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