April-May 2013 LAM NZ update

The Annual LAM patient and scientific meeting was held in Cincinnati, Ohio, USA, April 12/13/14 2013.

More than 100 women with LAM from a dozen countries and more than 100 scientific researchers gathered at this year’s research and patient educational conference.

Scientific Director of the American LAM Foundation, Dr Frank McCormack’s opening words continue to give hope to the women attending the meeting and to all those women with LAM around the world.

“The pace of discovery in LAM rivals any in science. Breakthroughs in the genetic and molecular pathways responsible for disordered cellular growth in LAM, have revealed many promising therapeutic targets. The first randomised trial based on these seminal research findings was completed in 2011 and a therapy is now available. These astounding advances are a credit to the community of LAM families who have demonstrated the foresight to organise, participate enthusiastically in research studies, and engage the scientific community through research funding and scientific meetings such as this one.”

New Zealand’s LAM community was represented at the 16th annual conference in Cincinnati by Bronwyn Gray, Director of the NZ LAM Trust.

San Diego based New Zealander Dr Jilly Evans convened and coordinated the two hour Poster Session and Professor Vera Krymskaya, senior LAM research scientist presented her latest findings.

This year’s conference covered exciting presentations in basic scientific and clinical areas while sessions for LAM patients and their families were presented concurrently. At the beginning of each scientific session, a LAM patient addressed the scientists and doctors and spoke of her diagnosis and her personal experiences of living with LAM. Patients, as always, were encouraged to talk with the doctors and the researchers at all times throughout the three day meeting.

The two way communication is a major feature of the Cincinnati meetings and offers vital and valuable opportunities for learning and understanding of LAM.