Helping to determine LARA’s forthcoming research projects, members of LARA’s Medical and Scientific Advisory Board, Prof Judith Black AO and Prof David Sonnabend of the University of Sydney, met with Dr Jeff Lindenmayer of Melbourne at LARA’s first LAM Symposium held at the University of Sydney on 10 November 2008.rof Allan Glanville of St Vincent’s Hospital Sydney and Prof Greg Snell of The Alfred Hospital Melbourne joined the meeting by telephone. Members of the LARA Executive were present but did not participate in the discussions.
The meeting was adddressed by telephone by representatives of the US-based National Disease Research Interchange (NDRI) www.ndriresource.org which collects organs, blood, serum, chyle and asites from women with LAM and others in USA and Europe, rushing the samples to researchers. The meeting discussed whether NDRI could extend its activites to Australia, facilitating access to LAM tissue, explanted lungs etc for research. NDRI is interested, but needs to familiarise itself with this region, its major hospitals, research labs, protocols customs regulations, and other issues.
Melbourne representatives of Circadian Technolgies www.circadian.com.au were linked by phone to the meeting, listening to NDRI’s presentation. Circadian may be able to help research efforts.
Prof Allan Glanville spoke of ShareLife Australia www.sharelifeaustralia.com.au a business-led organisation focused on improving the availability of organs for transplantation.
Ian Eslick of LAMsight www.lamsight.org based at MIT Media Lab, Boston USA addressed the meeting in person, explaining his work with Amy Farber of the LAM Treatment Alliance www.lta.org to create a centralised database of LAM patients, thier symptoms and treatments. To be accessible to women with LAM, their families, clinicians and researchers, the site will provide an invaluable resource for cross-checking data and formalting research proposals.
Dr Lyn Moir, inaugural recipient of the LARA & NZ LAM Trust Scholarship, talked about her ongoing research. She and the head of the University of Sydney LAM research, Prof Judy Black, stressed the importance of acquiring LAM tissue for research.