Chairman's statement
Les Tippin, Chairman of the Marfan Trust
The Trust was formed in 1991 when we funded the initial study into the gene. The year 2000 saw the creation and opening of the dedicated laboratory at St George's University of London.
This facility is the heart of the Trust where, over the years, the detection of the gene has been refined to a level now that was not possible 5 years ago.
The detection rates now achieved offers patients the possibility of early treatment in terms of medical advice/support that will ultimately assist in prolonging their lives.
Our additional work in keeping the medical profession informed through the issue of dedicated medical pamphlets is another important facet of our work.
In 2002 we contributed to the international Gene Map, which enables doctors/geneticists to diagnose the symptoms of Marfan syndrome in all its forms. Our involvement with this particular area of research, is in my view, of particular importance and interest. As the Trust has limited reserves I am extremely keen to collaborate with all Research Centres to ensure continuous exchanges of knowledge on the condition.
Over the past few years the Trust has worked hard to raise the profile of Marfan syndrome both within the medical profession and to those who are or may be affected. In doing so we have managed to secure larger donations and thus grown our research base in a number of areas. We will continue with our endeavours to support the community to enable a better informed medical community so that all patients are well serviced in terms of best medical treatment for the various conditions that the Marfan syndrome exhibits. However, in order to maintain this level of research we must continue to call upon all of our resources to support the trust. We are currently up-dating our website in a more user friendly format, with information, advice and contact points. The new website will also allow donations to be made through a verified secure portal which will be simple to use and we hope will encourage all those who visit the site to make a donation.
We are continuing to promote the Trust through a range of activities and would welcome all those who would like to participate in support of our work. For those who took part in our activities during 2007 to raise funds, may I say a very big thank you and encourage you to support us again in 2008 and beyond.