NEWSLETTER No.2 - March 2009
To All Our Friends:
As always the only place to start is to extend a huge thank you to everyone who continues to support AFRT. The amount of time that is given in order to raise funds and to help us keep our information up to date never fails to leave us feeling very grateful.
AFRT is a small charity and we are conscious that from time to time we may be silent in our activities. This newsletter is a vehicle to update everyone on what has been happening.
Firstly it is worth reminding ourselves what the Trust is all about:
We are a registered UK charity, formed solely as a result of Alison’s condition specifically for the funding of research, treatment and elimination of a particular nasty brain tumour known as Glioblastoma. There is no known cure for this tumour. It is a devastating disease. The Trust exists for sufferers, families and all health professionals dedicated to the research, treatment and care for this form of brain tumour. Fund raising will continue in Alison’s memory and will be used to help fund a future research project into the causation, nature and treatment of patients with Glioblastoma multiform brain tumours.
The Royal Marsden Hospital told us that “Malignant gliomas are among the most devastating of cancers. While less common than other tumours, they often strike in the middle of productive life and are the 5th commonest tumours in adults of working age. Every year 6,500 people in Britain are diagnosed with a brain tumour and 3,400 die. Malignant brain tumours are the commonest solid tumours in children and malignant gliomas remain the most devastating of these.
The last three decades have only seen two advances in the treatment of malignant gliomas. In the 1960’s and 70’s radiotherapy was shown to prolong life and improve the quality of life. A new anticancer drug, developed in the UK in the 1980’s and 90’s (Temozolomide), has shown additional effectiveness. These advances fall far short of what we would expect from modern effective cancer treatments. Investment in research has concentrated on more common tumours with brain tumours remaining “the forgotten disease”.”
This is why we remain committed to pursuing the funding of research into Glioblastomas.
Trust Recent Achievements
Since our last Newsletter this is what we have achieved:
□ Our web-site went live about two years ago and during this time we have had nearly 5,000 visits and the rate is now about 12 a day.
□ We have received positive comments from a number of medical professional and other visitors. Our website www.afrt.org.uk has been given a link from Cancer Bacup. Cancer Bacup turns down most applications for links from its website and so our success is a major achievement. It will assist anyone seeking help to access the latest and most up to date information about Glioblastoma. We have also been given a link from the website of The College of Neurosurgeons.
□ With all your help we have now raised in excess of £45,000, which remains available for investment into a research project.
□ The Trustees have met with Michael Brada, Professor of Oncology at The Institute of Cancer Research and The Royal Marsden NHS Foundation Trust. Discussions are currently taking place with a view to funding assistance on a research programme.
□ We have three 49 Clubs running and have so far have paid out £2,905 in prize money.
□ We have held several trustee meetings covering such subjects as the review of request for funding of research projects, fund raising opportunities and web-site updates.
□ We continue to have contact with a number of similar charities and also with Sun Microsystems Charitable Foundation. Sun and their employees have been excellent at raising money for the Trust and we thank them considerably.
We love hearing about some of the things that people get up to in raising funds for us. Here are some of the key highlights over the last few years:
A couple of Sun employees, Sati and Bob, ran in a half marathon at Reading and raised a fantastic £1,582.
This was organised by Sati. It was enjoyed by all who took part and raised a terrific £1,870 for the Trust.
Samosa days at Sun MicroSystems
The Samosa days at Sun organised by Sati and friends must be one of the most popular events. It is amazing that such a simple yet wonderfully tasty food raises so much money for us. The production and order taking effort that goes into a Samosa day is phenomenal. So far there have been three events, November 07, April 08 and December 08. The amount raised so far is a fantastic total of £4,518. We are also very grateful to Sun Microsystems Charitable Foundation who match the funds raised by employees.
We have had several 49 clubs running in different areas. One in Suffolk, one at Sun and the area around Camberley and one in the Midlands. So far the 49 clubs have raised £7,964. The idea is to sell 49 tickets for £24 each and this entitles one to participate in 12 monthly draws. The prize is £49 per month on the winning Lotto Bonus ball for that draw. So the odds of winning are very very good when compared to anything else be it the lottery, football coupon or bingo. It is a little bit of fun for every participant.
Chocolate Cake and Coffee Morning
Continuing on the theme of eating (!), a chocolate cake and coffee morning held in Hadleigh, Suffolk, raised an incredible £460. There was an array of delicious chocolate cakes such as never seen before! Our grateful thanks go to Lindsay and Graham and to all who helped to make this such a successful event. So much so that there was talk of a special recipe book! The event even caught the attention of the local press.
Our sponsor from Switzerland has specifically donated funds of £10,148 which have been used to support a Neuro-Surgeon working at the INI in Hanover for two years. Part of his duties was to give us technical input to the web site.
We are grateful to Sue Death for organising a contribution of £100 from the Co-operative Society.
We have received other donations totalling £1,233 including one of a very generous £1,000.
Future Fundraising Events
An Italian Evening in Hadleigh Suffolk.
This will take place on June 12th at Priory Hall, Hadleigh by Courtesy of Mr & Mrs A Hilton. The £30 cost of the ticket will include a three course Italian Supper and Casino Entertainment. As well as organising and cooking for the above event, to raise even more, Merja and Kathryn are cycling 500km from Bologna to Rome in aid of the Trust. If you would like to sponsor this please contact the numbers below.
Tickets /sponsorship can be obtained from/given on 01473 822464 or 01787 210828
Sati is currently in training for this event so watch this space! We are very grateful to him for this and wish him the very best of luck.
Chocolate Cake Event
Following upon the success of last year and by popular request it is hoped that another event will be arranged for September.
We thank everyone for their contributions and long may you all want to eat, jump and run!!!
Let us take a paragraph from our first newsletter to still holds true – “We welcome additional content, technical support, funding, applications for research sponsorship and advice in order that we may all improve our global understanding of this tragic condition. We really are dedicated to and passionate about passing on all information concerning Glioblastoma and we are determined to provide as much support as possible to sufferers and their families. Our operating costs are less than one percent of funds raised thanks to the kindness and dedication of so many people.”
We will continue to ask for funds. We firmly believe in the objectives of the Trust and we are committed to funding a research project to help us fight Glioblastoma! If you can help in anyway please do get in contact with us.
Andy Balchin, Robert and Sue Kettlewell, Graham Panton and Roy Death
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