LAM Trust Director, Bronwyn Gray attended the September ’08 LAM Treatment Summit held at the University of Sussex, Brighton UK and hosted by the LAM Treatment Alliance. The meeting paid respects to the late Michelle Gonsalves, founding President of FLAM – the French LAM patient organisation who died in Tours, France on August 31st. Michelle was a leading light in LAM Matters in Europe and internationally and she will be sorely missed by patients, clinicians and researchers.
Among the important issues raised during the two day summit was the critical matter of the collection of biopsied LAM tissue and other LAM patient material for use in research; The Summit was addressed by Jeffrey Thomas – Director of Donor Services at the Philadelphia based NDRI – the National Disease Research Interchange. The NDRI’s work in rare disease tissue procurement and distribution to research labs is well established in the USA and in Europe. A meeting of the members of the LAM Australasia Research Alliance’s ( LARA ) Scientific and Medical Advisory Board and Mr Thomas is planned for November in Sydney.
A Centre of Excellence in LAM Studies has beeen established at Harvard University and the Brigham and Womens Hospital in Cambridge, Boston USA. The centre is to be directed by Dr Lisa Henske who has worked in LAM research for the past 12 years and who has presented at LAM Symposia in both Auckland and in Sydney. Dr Henske discovered the importance of the tuberous sclerosis genes and the connection to LAM in 2000.