SDBTT Astro fund is the only charity in the world to concentrate solely on low-grade gliomas, of both adult and paediatric types.
Since the Astro Fund was founded:
They have funded five medical research projects into low-grade gliomas (LLGs), supporting groundbreaking work which would otherwise not have been possible.
Individual, confidential support for patients, carers, friends and relatives of those affected by LGGs is offered via telephone, email and letter.
Group support is available through the international internet chat group “Low-Grade Glioma Support”, incorporating approximately 150 members from the US, UK and Europe.
The first ever UK Low-Grade Brain Tumour Conference for patients and carers was held in London in April 2006, sponsored and administered by the Astro Fund. Demand for places was so high that similar events now regularly take place in Liverpool and London, in recognition of the unique challenges facing those living with a slow-growing brain tumour. Funding is also available to expand this service to other regions of the country; please contact the Astro Fund for more details.
About LGGs
SDBTT Astro Fund was founded by Katie Sheen, whose sister's husband Paul Chamberlain was diagnosed with a low-grade astrocytoma in December 2000. Sadly, Paul passed away on 7th March 2006, after a truly inspiring life.
Gliomas are the most common type of primary brain tumour; of these, 30% are low grade.
Beginning in childhood, low-grade gliomas can lie undetected for many years before symptoms suddenly appear and turn the victims’ lives upside down. From then on, it is a waiting game to see whether the tumour will remain stable or progress to a more malignant form of brain cancer. This potential change is currently unpredictable and it is therefore difficult to define prognosis for individual patients.
There is no evidence to suggest that early treatment with either surgery or radiotherapy gives any survival advantage, or prevents malignant transformation (the process by which these tumours change from a low-grade into a high-grade lesion). This is why most consultants adopt a "wait and see" policy, with patients returning for scans every six months. Only when there is evidence that the tumour is beginning to change will treatment begin.
The effects of being told that you have a brain tumour, but that it cannot be treated until it grows more quickly, can be devastating; those diagnosed and then sent home to wait for their next scans can feel very alone.
We urgently need to encourage more research into the causes, biological behaviour, management and treatment of these ‘time bombs’, whose victims are well aware of the weeks ticking away.
Visit the Astro Fund web site.
