July 2009 LAM update

Building on networks made at 2007 and 2008 LAM Symposia hosted by the Boston based LAM Treatment Alliance, New Zealand LAM Trust Director Bronwyn Gray attended the May 2009 American Thoracic Society ( ATS) meeting held in San Diego. The LAM Treatment Alliance hosted an information booth during the ATS meeting and the New Zealand organisation took this opportunity to work in the Booth and to build further global LAM research connections.

The Trust was represented at last month’s “High Cost, Highly Specialised Medicines Forum:” held in Wellington; this meeting was a follow up from a two day Forum held in November 2008. As with many rare diseases, where global research and scientific collaboration is moving ever forward towards trialling potential drug therapies, funding and access within New Zealand to new, high cost, highly specialised medicines, is of vital importance. The LAM Trust recognises the need to be at the forefront of the politics of access to the latest therapies and is working on behalf of LAM patients to ensure this.

Continuing efforts to raise funds to support New Zealand’s role in playing its part in Global LAM investigation, were helped by the donation in June of $2,000 from Chef and LAM Trust supporter Peter Gordon; Peter’s appearance fee for a television commercial showcasing ” The Heart of the City” was directed to the Trust’s website. Donations to the Trust are sought on a continuing basis and can be made via this website; tax incentives for charitable giving were highlighted in a recent NZ Herald article, confirming that from April this year, donors can now claim back from the Tax Department 33% of whatever they give to Charities.