The mission of LAM Australia Research Alliance is to improve the health prospects of women living with lymphangioleiomyomatosis (LAM) .
LAM Australia’s goals are to: fund research to accelerate the discovery of better diagnostic techniques, tailored treatments, and ultimately, a cure for LAM; improve doctors and allied health professionals’ knowledge of LAM; and support women living with LAM.
Membership of LAM Australia is open to women living with LAM, their friends and family, and anyone with an interest in LAM and the work of LAM Australia Research Alliance. Join us here ›
Founded in 2006, LAM Australia Research Alliance Inc is a registered not-for-profit charity. Our volunteer workforce is supported by the expertise of generous professionals who provide their services free of charge for auditing, legal advice, graphic design and website design. Patron Dr Linda Friedland is a Perth-based doctor, author, media personality, health and well-being expert. Since becoming Patron in August 2013, Dr Friedland has met with LAM researchers at Sydney’s Woolcock Institute of Medical Research to deepen her understanding of LAM in all its complexities. Her speech to participants in Sydney’s Worldwide LAM Awareness Day Walk in Centennial Park on 01 June 2014 was inspirational.
In December 2014 we added the 100th woman living with LAM to the LAM Australia database. By March, four more had registered. It is likely that more women are living with LAM in Australia. Others may prefer to remain unidentified, or more likely, have yet to be diagnosed correctly. However, LAM remains very rare. Current estimates are that only eight women in a million are living with LAM worldwide. As knowledge of the disease and diagnosis methods improve, this ratio may increase. If we can improve rates of diagnosis and more cases are identified, vital research and clinical trials will get a boost. Meanwhile, research is revealing facts relevant to diseases like cancer which are widespread in the community.
LAM Australia Research Alliance has a Medical & Scientific Advisory Panel which guides funding initiatives: Prof Judith Black AO, Dr Tamera Corte, Prof Allan Glanville, Dr Jeff Lindenmayer, A/Prof Mervyn Merrilees, Prof David Sonnabend, Dr Helen Whitford, A/Prof Deborah Yates.
At the AGM held on Worldwide LAM Awareness Day, 01 June 2015, Janet Neustein retired from the presidency. Dr Brian Oliver was elected President unopposed. Michael Neustein was returned as Treasurer. The positions of Vice President and Secretary remain open.
MICHAEL NEUSTEIN, President
The President of LAM Australia Research Alliance, Michael Neustein, is an urban planner and architect with decades of experience serving voluntary organisations. His goal for LAM Australia is to raise funds for research to solve the riddles of LAM and develop tailored treatments for the disease.
He is motivated by his goal of improving the health of his wife and over a hundred women in Australia, who are living with LAM.
MEL HAWYES, Committee Member
Former Vice President of LAM Australia Research Alliance, Mel Hawyes has a demanding career in public service and social policy. “I was motivated to do something useful by working for LAM Australia. Although living with LAM, I no longer feel powerless. Each woman living with LAM has her own journey, but mutual support is a source of strength and solace. Handing researchers the money we raise and hearing about their discoveries is remarkable.”
PAT EVANS, Committee Member
A professional fundraiser for close to 30 years, Pat Evans contributes her considerable skills and experience to LAM Australia. “I was inspired and motivated by Janet Neustein to join the LAM committee. This role has proved to be a rewarding experience and I consider myself privileged to be involved with such a dedicated team. I recently moved “bush” and therefore can’t be as hands on as I would wish, but will continue my involvement in any way I can.”
YASUKO WILSON, Committee member
Diagnosed with LAM in 2000, international business woman, medical translator, artist, community harmony advocate and fundraiser Yasuko Wilson has broad experience of the LAM community -particularly in the Gold Coast and Melbourne, the evolution of therapeutic responses to LAM and the development of LAM Australia Research Alliance.
“I would like to contribute and help all members of LAM Australia work together. What I bring to the Committee is my time, friendship and honesty.”
FAITH WIELAND, Committee member
Faith has a background in local government, cultural projects, urban planning and education. She has served on the boards of art centres, a theatre company and many festivals.
“I started volunteering with Janet in November 2014 and love LAM Australia’s depth of involvement with the cutting edge of Australian medical research; the energy, urgency and excellence of this small organisation and its translational work, supporting women living