|
 |
|
Barretts Oesophagus Foundation Newsletter - 12 2007 |
The Foundation is a member of the Association of Gastrointestinal Charities and is well supported by distinguished members of the medical community. Barretts Oesophagus Foundation is a registered charity under number 1077633
Feel free to pass this e-mail to a friend 
|
Dear SubscriberCharity merger with McCord Foundation The McCord Foundation was set up in memory of Mike McCord who died at a young age of Barrett’s adenocarcinoma, without having the benefit of a prior diagnosis of Barrett’s. His wife, Mimi McCord, set up a charity in order to promote the early detection of the disease. The McCord Oesophageal Cancer Fund is currently completing an agreed merger with the Barrett's Oesophagus Foundation and we are excited about the new possibilities that this opens up to raise public awareness of Barrett’s and raise money for important research. 'Row for Neil, Try for Alan' Campaign I thought it might be helpful to bring you up to date on the above campaign, on my current role in PROBE and on some thoughts for the future. You may have read on our website earlier this year that I launched the appeal in memory of my brothers, Neil and Alan, who died of Oesophageal Cancer. As they were both greatly involved in sport, the appeal has been aimed at rowing and rugby clubs. I tried my best to circulate the poster, but with my limited resources, I have to say that the response has been disappointing. You may have read on the website that I had taken a job in China, which meant that I left the Chair of PROBE in the capable hands of Derek Larcombe. In the event, that job did not work out and after a very enjoyable holiday in Hong Kong, I am now back in West Yorkshire and considering the best way I can support our cause. The first thing is to try to maximise the effectiveness of the Neil/Alan campaign, because I think there is some additional mileage available. Accordingly, I have been emailing a number of targets, mainly rowing clubs because my brother Neil had a high profile in the sport and I will try to target some overseas clubs, as he had strong international contacts. However, it would also be great if any of the readers of this newsletter could help. Please download the poster from our website, or email me at robin_thom05@hotmail.com for hard or electronic copies of the poster. We may still develop the campaign to raise a respectable amount. As for the future, I will try to pick up the threads to support Derek and the other enthusiasts. I would like to develop the fledgling West Yorkshire branch, but I believe we have to raise the national profile considerably before success can be achieved locally. For this reason, I welcome the incorporation of the McCord appeal with BOF and the increased focus on strengthening London-based structures. But I have also proposed that we should bring all the threads together under an Oesophageal Cancer banner, to make it clear what it is all about. All this work was started by the Barrett's Oesophagus Foundation because of the connection between the condition and the rapid rise in Adenocarcinoma of the Oesophagus and PROBE was suggested as a handy name for the patient network. However, with the incorporation of the McCord, I believe there is a real danger of confusing the public. There is, of course, the very effective Oesophageal Patients’ Association, which focuses on patients. I would like to see some sort of coming together of all groups, under a banner like ‘Oesophageal Cancer Action’ or ‘Oesophageal Cancer Alliance’, so that we can mount high-profile national campaigns under one banner. Examples would be participants in marathons who would wear a common OC banner, because at the end of the day the real issue for the public is that of one of the west’s fastest rising cancers which kills over 6,000 people in the UK each year. What do you think? Please comment on the Patients’ Forum or email officials. We need to have a step change in the perception of this illness if we are to raise the funding for research to conquer it. Cycle around the beautiful Isle of Wight and help me to raise money for Barrett's Oesophagus Foundation, in memory of my husband who died from Cancer of the Oesophagus in September. This sponsored bike ride will take place over the weekend of the 17th and 18th May 2008. The basic route is 62 miles on quieter roads and surfaced cycle ways. An additional loop of 9 miles for day one and 15 miles for day two will also be included for those wanting a bigger challenge. Overnight will be on the south coast of the island near Brighstone - both camping and B&B (limited) are available (there will be support vehicles for bags and equipment). If you are interested in taking part, helping out or sponsoring the event please contact me, Claire Twort, using one of the following options: e-mail: claire.powles@btopenworld.com Claire Twort 2 years ago my husband and I had our 40th anniversary and I had my 60th Birthday. We decided we did not really want any presents so instead we held a family garden party on August bank holiday (although our actual dates for the above were in November too Cold, we thought to hold it then remembering the snow on our wedding day!) and asked our guests if they would like to contribute to The Barrett's Oesophagus Foundation. They were very pleased to contribute. Seems they enjoyed it so much they asked us to hold another one the following year. This time we collected for our local branch of the Digestive Association who put the money to the Endoscopy Dept at our local hospital. Of course we were asked to do it again this year and this time it was for BOF again! So even an extended family get together can help raise funds towards research for us - every little bit helps with fun at the same time, including the hang overs the next day - NOT me the guests, unfortunately Barrett's prevents hang overs now but still enjoyed it!! . Moggs New treatment available for patients at Addenbrookes In the past 5 years when we have detected high grade dysplasia changes in Barrett’s oesophagus and recommended endoscopic treatment, we have generally referred patients to London for treatment with a laser technique called photodynamic therapy. Recently, a new treatment has become available called radiofequency ablation. This is simpler than photodynamic therapy and we are delighted to say that thanks to a very generous grant from the Cambridge Cancer Research Fund, we have been able to purchase this equipment. This is excellent news, enabling us to provide patients with state of the art treatment locally. Rebecca Fitzgerald
Since our new website was launched in June 2006, over 105,000 pages have been viewed by over 25,000 unique visitors, and 69,201 pages viewed by 15,153 unique visitors during the first 9 months of 2007. Pretty impressive figures. We thank The Escape for all their help in designing, building, developing and maintaining the Website which has contributed greatly to this success. One particular area that has proved both popular and successful is the The Patient Forum which has enabled many to share their concerns and hopefully gain a lot of useful information. However we must not be complacent and we dearly need to find the resources, not only financial but perhaps more importantly appropriate material that can be shared, to ensure that we can effectively and regularly communicate with not only our members but also the world at large. All contributions, tips, ideas and suggestions will be gratefully received. A lot of effort is currently underway to update the information on the BOF section of the Website not least in respect of the leaflets that are available covering a wide range of subjects, so please watch this space. The beauty of the Internet is the ability to reach such a wide audience. So far we have had visitors from at least 112 countries chief among them being from not only the UK but also the USA, Australia, Ireland, Canada, Netherlands, Germany, India, New Zealand, South Africa, Hong Kong and Slovenia. One of the most important aspects of good website design is that it must be user friendly for search engines. No less than 414 search engines and Domains have referred visitors to our website during 2007, the most common search engines and Domains employed include www.google.co.uk, www.google.com, www.patient.co.uk, www.cancerhelp.org.uk, en.wikipedia.org, uk.search.yahoo.com, hcd2.bupa.co.uk. Google UK is the most commonly used search engine, referring 46% of visitors and the most commonly used search terms include barretts oesophagus, barrett's oesophagus, barretts, oesophagus, barrett oesophagus, barrett's and barrett's oesophagus foundation. May 2008 see an even bigger and better response. Charles Marchant-White Please note in your diaries the PROBE AGM will be held at University College, London, on Friday 11th April 2008. It will be held late in the afternoon post the Second National Barrett's Oesophagus Symposium and we will have a number of expert speakers as well as the PROBE Awards presentation for the best research paper on Barrett's Oesophagus. Full details are available on PDF here. If you are not a member and supporter of PROBE please join by going to www.probe.org.uk and click on green panel "Join P.R.O.B.E" or contact David Fletcher probetreasuer@hotmail.co.uk. PROBE is supporting patients and research into Barrett's Oesophagus so please join us and help us raising awareness and funding research. Also we need volunteers to help by joining the Committee and assisting in many other ways.If you have any skills that would benefit PROBE ie Secretarial, Newsletter Editor, Membership Sec etc please contact me at: Dereklarcombe@yahoo.co.uk Derek Larcombe Run for PROBE at the London Marathon - 13th April 2008 If you are running in the London Marathon on Sunday 13th April 2008 please choose us as your worth while charity to raise money, as Oesophageal cancer is one of the Western World's fastest growing cancers. I am coming out of retirement to run for The Barrett's Oesophagus Foundation/PROBE and will need your sponsorship...please indicate your commitment to me at dereklarcombe@yahoo.co.uk Derek Larcombe Raise money for PROBE whilst you shop! Do you shop online? Then please use www.easyfundraising.org.uk and register your cause which is PROBE, then you can shop at all the major sites by going via one website and each place you buy from will make a donation to the charity. Once you have made your first purchase you will see how it is the easiest way to shop on the Internet then please tell all your friends and family to join so we can raise more money to increase awareness into this horrid disease. All the major names such as Amazon, Tesco, John Lewis etc will make a nice donation plus special deals for those that do their Christmas shopping via www.easyfundraising.org.uk. Make sure you/we get something back from all that money you will be spending during the coming year and at no cost to you! Thanks for your support! May we wish you all a very Merry Christmas and a Happy and Healthy New Year! |
|||||||||
|
|