To celebrate the charity’s 30th Anniversary in 2012, the RSA is aiming to raise a total of one million pounds for research between 2010 and the end of 2012. The money will be used to fund several projects into Raynaud's and scleroderma. People with these conditions will be given an opportunity to send in suggestions as to what they feel are the most important areas of research that they would like to see funded. These ideas will then be considered by the trustees and medical advisers. One of the aims is to generate enthusiasm amongst the medical profession throughout the UK, in order to help find better treatments and ultimately a cure.
President of the RSA Dame Carol Black has given the following words of encouragement: "It is a wonderful idea to celebrate the 30th anniversary of the RSA by having a campaign to raise one million pounds for research. The RSA has been crucial to the progress that has been made to date, but so much more remains to be done. It is on the common problems - calcinosis, digital ulcers, diarrhoea, bloating fatigue, sexual disfunction - which so blight people's everyday lives and cause distress and interference with normal activities, that research is particularly needed. This is a great campaign. If we all give a little, whether it be time, money, enthusiasm and/or support, we can get there."
In support of this project, Professor Chris Denton, Consultant Rheumatologist at the Royal Free Hospital in London states: “I think that you have had a terrific and timely idea. By focusing on research in the UK, this will be a very substantial investment that should yield results. Engagement of patients or "users" in identifying priorities makes this effort especially relevant and important. The Raynaud's link is unique and is also an area that complements other international initiatives. There is growing appreciation that the burden of scleroderma and Raynaud's extends into many important and neglected areas which this initiative can start to address.”
There has been real progress in some aspects of scleroderma over the past 30 years - kidney failure and pulmonary hypertension are now more treatable. However these problems only affect a minority of patients, whereas other neglected aspects are much more frequent with very limited treatment. This includes pain, Raynaud's, digital ulcers, digestive tract disease (especially the bowels), calcinosis, fatigue, sexual dysfunction. The need to understand the cause and mechanism of these symptoms is very pressing, in order to develop better therapies and improve the lives of patients with Raynaud's and scleroderma. These topics will be priority areas for this initiative but scientific projects with potential for patient benefit will also be considered. We are therefore inviting everyone who has Raynaud's and/or scleroderma, their relatives and friends, to join us in a united effort to raise a million pounds over two years in the hope that the results of new and ongoing research, will help to improve the quality of life for people with these conditions.
To date researchers have only just reached the tip of the iceberg but with this extremely ambitious project and with your support, we feel that anything is possible.
We can supply leaflets, posters and other publicity material if you can organise an event or another way to support the project is by purchasing some of our promotional items - see our online shop.
To donate online visit: www.justgiving.com/rsamillion or send a cheque made payable to ‘RSA’ to 112 Crewe Road, Alsager, Cheshire, ST7 2JA
To download a leaflet about the 'Cool Million' Appeal click here.
To find out about the launch by local MP, Fiona Bruce click here.
Together we can make a difference!