The Marfan Trust funds research into Marfan Syndrome, which is a genetic condition that affects the body’s connective tissue. I first heard of Marfan Syndrome when I worked in a Clinical Genetics department as an IT Manager. I used to see all these different syndromes on reports, but with no clinical background they could have been a list of anything. Little was I to know that my closest friend actually had Marfan Syndrome.
At the age of just 27 my closest friend who I had known since school died unexpectedly. We were all at a loss as to what could have caused this. It took what felt like an age for us to actually find out the cause of death, which transpired to be Marfan Syndrome.
Since then, I have turned my old commercial photography venture that I set up as a student into a fund raising venture for the Marfan Trust. The Trust not only does work into treatments for the complications that Marfan Syndrome creates, but also raises awareness of the condition. Unfortunately many genetic conditions such as Marfan Syndrome are not well known, even by GPs, and therefore cases can easily go undiagnosed until there is a serious complication.
You don’t have to donate money or buy a photograph from this site to support the Marfan Trust, you could simply tell someone else what Marfan Syndrome is. If that leads to a single person being diagnosed with the condition that might otherwise have been missed then it has been completely worth while.