Astro Brain Tumour Fund was founded in April 2001 in order to focus purely on low-grade brain tumours, and in particular:
- raise funds for research and support projects,
- gather and share information,
- raise awareness of the challenges of living with a low-grade brain tumour
- and offer support to those whose lives are touched by this tumour type.
From small beginnings…
Astro Brian Tumour Fund was founded by Katie Sheen, whose Sister's Husband Paul Chamberlain was diagnosed with a low-grade astrocytoma in December 2000 at age 30, just a few months before his second child was born. Shocked to discover that there was no low-grade Glioma (LGG) research in the UK at the time, and struggling to find out more about this tumour type, Katie was determined to raise money and encourage more LGG research, whilst offering hope, information and support to other families living under the same pressures. Sadly, Paul passed away on 7th March 2006, after a truly inspiring life; but his incredible spirit of openness, integrity and optimism remains at the heart of Astro Brain Tumour Fund.
"Astro Brain Tumour Fund"was suggested by Paul, who thought it ironic that a brain cell as beautiful as an astrocyte could cause so many problems when it became an astrocytoma, the tumour he was diagnosed with. "Astro" means star, and the name was chosen to reflect what he and the rest of our family hoped Astro Brain Tumour Fund would become - a light in the darkness for those similarly diagnosed.
Thanks to the incredible efforts of everyone who has raised money under the Astro Brain Tumour Fund banner, we have funded six medical research projects into low-grade gliomas since our foundation, covering both adult and paediatric types, and have also supported a number of qualitative research initiatives. We openly welcome researchers to contact the low-grade brain tumour community through Astro Brain Tumour Fund, and are happy to advertise opportunities for patients, carers, friends and families with direct experience of this tumour type to help change the future for the better.
We are grateful to LGG patient Joe Ralph for founding the internet support group Low Grade Glioma Support and then trusting Astro Brain Tumour Fund enough to transfer ownership of this amazing resource to us. The group began as a result of the first ever LGG Information Day held in the UK, which was sponsored by Astro Fund and organised in partnership with the National Hospital for Neurology and Neurosurgery, the Royal Free Hospital and the North London Cancer Network in 2006. Over the last few years we have seen membership of the group grow to over 300 patients and carers from around the world, offering mutual support and exchanging information and encouragement for every stage of the LGG journey.
In 2007, Katie's work for Astro Brain Tumour Fund was Highly Commended in The Beacon Fellowship Award for New Initiatives, in recognition of an 'outstanding' contribution to charitable and social causes.
Katie is a member of the British Neuro-Oncology Society (BNOS) and from 2008 to 2011 was a patient representative in the BNOS Advisory Group for the development of National Guidelines for Adult Brain and CNS Rare Tumours (Primary CNS Lymphoma, Medulloblastoma, Pineal Tumours and Optic Gliomas). The BNOS Advisory Group worked with the Government's Cancer Action Team to develop National Institute of Clinical Excellence (NICE) clinical guidelines for Brain and CNS tumours.
Astro Brain Tumour Fund is a founder member of the International Brain Tumour Alliance (the IBTA), formed in May 2005 to improve links between Brain Tumour charities, patients, carers, and health professionals throughout the World. Via the IBTA and other Cancer forums, we actively seek to improve public awareness of the specific challenges faced by people living with low-grade brain tumours, and to encourage the international exchange of information about the possible causes, management and treatment of this type of brain tumour.
We are also a member of Brain Tumour Research, a group of independent UK charities working together to raise money for brain tumour research and support projects across the UK, and to lobby Parliament for increased support for the brain tumour cause as part of the Brain Tumour Consortium.
To read about our Brain Tumour Research partner charities please click here. Together we provide a wide range of information, support and research initiatives for tumours of all grades - find out if there is somebody in your local area offering support services close to your home, or raising money for our common cause, to improve the lives of everyone affected by brain tumours.
As you can see, Astro Brain Tumour Fund is working hard to increase the profile of low-grade gliomas at both local, national and international levels; so if you are keen to support the LGG brain tumour cause but prefer not to fundraise, please do not hesitate to get in touch so that you can help with the campaigns. Thank you.