The LAM Australasia Research Alliance (LARA) is dedicated to improving the health prospects of women with LAM in Australia, New Zealand and throughout the region. A disease that affects only women, LAM is rare and often devastating.
Major Donors
Macquarie Group Foundation
Henry H. Roth Charitable Foundation
Hollick Wines
Acknowledgements
LARA thanks the professionals who work pro bono for this not-for-profit organisation. We highly recommend the services of:
Ben Higham, Webhead
Karen Riethmuller, KGR Design
Allan Hughan, Accountant
Peter Kelso, Bartier Perry Lawyers
Contact Us
LAM Australasia Research Alliance
Nevena 0419 185 491
Janet 0411 816 444
PO Box 636 Bondi Junction NSW 1355
Australia
Message from LARA's Patron, Bettina Arndt
I am delighted to have been asked to be the Patron of LARA.
I have been hearing about LAM for many years from my good friend, Professor Judy Black, one of the world’s key researchers into this rare disease.
Years ago, Judy started urging me to become involved. But then I met the irresistible force – Bronwyn Gray – who persuaded me to write an article on LAM for the Australian Women’s Weekly. Meeting so many of our fabulous LAM women and learning all your stories was a wonderful experience. It convinced me that I needed to come on board and do what I can to help support women with LAM now and in the future.
Since then we succeeded in having ABC Television create a feature women with LAM for widely-watched documentary, Australian Story.
I am concerned to let as many people as possible know about LAM. We hope to reach even women with similar symptoms, yet who have not yet been diagnosed properly. We have had 15 new LAM women have come forward since my article was published, many of whom had lived for years with unexplained symptoms.
Symposium in Blue Mountains, 2006
The international scientific symposium held in Sydney’s Blue Mountains in May 2006 raised real hope that better treatments and even a cure may be on the horizon. We are delighted that some of the eminent Australian scientists and clinicians who took part in the symposium have agreed to join LARA's Medical & Scientific Advisory Board. These include some of the world’s leaders in LAM research. I am also very excited about the new group of women with LAM who have become involved in our organisation. There’s a fresh flood of energy with people offering their talents to help us expand the roles within our organisation. With increased numbers, we now have the opportunity to tackle other tasks: educating the medical world about LAM, providing regular news to you all through this website, raising awareness and undertaking major fund-raising for research funds
We have set up new committees to focus on these tasks. We will be circulating a survey to all of you to see if you would like to be part of any of these activities. We need to know about any skills, experiences, and contacts you have which would help us get this show on the road, or any friends or relatives who are willing to help. And we need a mother! Many of you will have heard about the huge success of Bronwyn Gray in New Zealand and Sue Byrnes in the US – both mothers of women with LAM who are determined to try to save their daughters. They have both done an astonishing job - raising money for research and gaining recognition for LAM. We need mothers who are willing to play an active role in speaking out about the disease in Australia – preferably confident, articulate women whom we can help become comfortable with dealing with the media. It is far easier for a mother to speak out on behalf of her daughter than for LAM women to seek help for themselves. And yes, Dads would be great too – if any father is willing to volunteer.
So let’s all get together and put LAM on the map in Australia!
Bettina Arndt