LAM Action began life in 1997 as The LAM Trust. Thanks must go to Eva Rathbone, a patient with LAM, who a few years earlier had been concerned to find that there appeared to be very little research into LAM. The Nottingham group were stimulated to carry out an initial study to see whether LAM might be related to taking the oral contraceptive pill (it isn’t). By coincidence a few patients around Nottingham were diagnosed as having LAM in fairly close succession so they decided to hold a meeting in Nottingham for local patients. None of the patients, of course, knew anyone else with LAM. By this time Simon Johnson was starting to do some further research into LAM and to do this he had obtained names and addresses of patients with LAM elsewhere in the country. It was a fairly short step, therefore, to invite all the patients with LAM to a meeting in Nottingham and the first meeting was held in the summer of 1997.

Over the years the activity of the group grew tremendously and in 2002 the decision was taken to change the name of the group to LAM Action and establish ourselves as an independent charity instead of being part of Nottingham City hospital’s charitable trust.