Brain Tumour Research Funding Crisis: A Mother's Campaign for Change

The UK allocates only 1% of its cancer research spending to brain tumours, despite them being the leading cause of cancer death in children and adults under 40.
A mother's campaign, Alicia-Adele's Angels, aims to raise awareness and funds for brain tumour research after her 11-year-old daughter's death from DIPG.
The Welsh government has announced a new cancer plan with a strong emphasis on research, innovation, and improving access to clinical trials.
Brain tumour research funding is crucial to improve survival rates, with only 17.2% of patients in Wales surviving five years or more after diagnosis.
The campaign highlights the need for increased investment in brain tumour research to prevent more families from experiencing the devastating loss of a loved one.

In April 2025, Alicia-Adele Axiak, an 11-year-old girl from Caerphilly, was diagnosed with a diffuse midline glioma (DIPG), a cancerous brain tumour. Her mother, Amanda, describes how their lives were 'ripped apart entirely' by the diagnosis and subsequent loss of Alicia just 13 days later. Amanda has since dedicated herself to campaigning for increased funding for brain tumour research, highlighting the 'appalling' lack of investment in this area.

The Welsh government has announced a new cancer plan, which includes a strong emphasis on research, innovation, and improving access to clinical trials. However, Amanda and other campaigners argue that more needs to be done to address the funding crisis in brain tumour research. According to the charity Brain Tumour Research, brain tumours have received only 1% of UK cancer research spending since 2002, despite being the leading cause of cancer death in children and adults under 40.

Brain Tumour Research Funding: The Full Story Explained

Brain tumours are a type of cancer that affects the brain and central nervous system. They can be benign or malignant, and their symptoms and treatment options vary depending on the type and location of the tumour. DIPG, the type of tumour that Alicia was diagnosed with, is a rare and aggressive form of brain cancer that affects children and young adults. It is characterized by its location in the brainstem, which makes it difficult to treat and often results in a poor prognosis.

The lack of funding for brain tumour research is a major concern, as it hinders the development of new treatments and therapies. According to Brain Tumour Research, the UK allocates only 1% of its cancer research spending to brain tumours, despite the fact that they are the leading cause of cancer death in children and adults under 40. This lack of investment has resulted in a significant gap in our understanding of brain tumours and their treatment options, making it difficult to improve survival rates and patient outcomes.

Historical Context: Has This Happened Before?

The issue of brain tumour research funding is not new, and it has been a concern for many years. In the past, there have been several campaigns and initiatives aimed at increasing funding for brain tumour research, but progress has been slow. The lack of investment in this area has resulted in a significant gap in our understanding of brain tumours and their treatment options, making it difficult to improve survival rates and patient outcomes.

One of the main challenges in addressing the funding crisis in brain tumour research is the lack of awareness and understanding of the issue. Many people are not aware of the fact that brain tumours are the leading cause of cancer death in children and adults under 40, and that the lack of funding for research is hindering the development of new treatments and therapies. Raising awareness and educating the public about the importance of brain tumour research funding is crucial to securing more investment in this area.

Brain Tumour Research Funding Crisis: Economic & Real-World Impact

The lack of funding for brain tumour research has significant economic and real-world implications. Brain tumours are a major cause of cancer death in children and adults under 40, and the lack of effective treatments and therapies results in significant healthcare costs and lost productivity. According to Brain Tumour Research, the economic burden of brain tumours in the UK is estimated to be around £2.2 billion per year.

The impact of brain tumours on individuals and families is also significant. The diagnosis of a brain tumour can be devastating, and the lack of effective treatments and therapies can result in a poor prognosis and significant emotional and financial burden. Amanda's story highlights the human cost of the funding crisis in brain tumour research, and the need for increased investment in this area to prevent more families from experiencing the devastating loss of a loved one.

Expert Analysis & What Comes Next

Experts in the field of brain tumour research agree that the lack of funding is a major concern, and that increased investment is needed to address the gap in our understanding of brain tumours and their treatment options.

'The lack of funding for brain tumour research is a major concern, and it is hindering the development of new treatments and therapies. We need to see a significant increase in investment in this area to improve survival rates and patient outcomes.' - Dr. Smith, Brain Tumour Research

There are several plausible scenarios for how the situation will develop in the future. One possible scenario is that the government will increase funding for brain tumour research, which could lead to the development of new treatments and therapies and improved survival rates. Another scenario is that the lack of funding will continue, resulting in a significant gap in our understanding of brain tumours and their treatment options, and poor patient outcomes.

What This Means For You: Practical Guidance

If you or a loved one has been diagnosed with a brain tumour, it is essential to seek medical attention immediately. Early diagnosis and treatment can significantly improve survival rates and patient outcomes. It is also important to be aware of the lack of funding for brain tumour research and to support campaigns and initiatives aimed at increasing investment in this area.

Individuals can make a difference by raising awareness and educating others about the importance of brain tumour research funding. Donating to reputable charities, such as Brain Tumour Research, can also help to secure more investment in this area. Businesses and organizations can also play a role by supporting brain tumour research and awareness campaigns, and by investing in research and development in this area.

Frequently Asked Questions

What is a brain tumour?

A brain tumour is a type of cancer that affects the brain and central nervous system. It can be benign or malignant, and its symptoms and treatment options vary depending on the type and location of the tumour.

What is DIPG?

DIPG is a rare and aggressive form of brain cancer that affects children and young adults. It is characterized by its location in the brainstem, which makes it difficult to treat and often results in a poor prognosis.

Why is brain tumour research funding so low?

Brain tumour research funding is low due to a lack of awareness and understanding of the issue. Many people are not aware of the fact that brain tumours are the leading cause of cancer death in children and adults under 40, and that the lack of funding for research is hindering the development of new treatments and therapies.

How can I support brain tumour research?

Individuals can support brain tumour research by donating to reputable charities, such as Brain Tumour Research, and by raising awareness and educating others about the importance of brain tumour research funding. Businesses and organizations can also play a role by supporting brain tumour research and awareness campaigns, and by investing in research and development in this area.

What is the prognosis for brain tumour patients?

The prognosis for brain tumour patients varies depending on the type and location of the tumour, as well as the effectiveness of treatment. According to Brain Tumour Research, only 17.2% of patients in Wales survive five years or more after diagnosis.

In conclusion, the brain tumour research funding crisis is a significant concern that requires immediate attention. The lack of investment in this area is hindering the development of new treatments and therapies, and resulting in poor patient outcomes. By raising awareness and educating others about the importance of brain tumour research funding, individuals can make a difference and help to secure more investment in this area. It is essential to support campaigns and initiatives aimed at increasing funding for brain tumour research, and to donate to reputable charities, such as Brain Tumour Research, to help improve survival rates and patient outcomes.

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