LARA’s mission is to improve the health prospects of women living with lymphangioleiomyomatosis (LAM) . Based in Australia and working to strengthen links with LAM organisations elsewhere, LARA works to: improve medical knowledge of LAM; fund research to accelerate the discovery of better diagnostic techniques, tailored treatments, and ultimately, a cure for LAM; and support women living with LAM.
Founded in 2006, the LAM Australasia Research Alliance, LARA, is headed by an Executive and guided by a Medical & Scientific Advisory Panel. LARA’s Patron, Dr Linda Friedland, is a Perth-based doctor, author, media personality, health and well-being expert. Since taking on the position of Patron in August 2013, she has met with LAM researchers at Sydney’s Woolcock Institute of Medical Research to deepen her understanding of LAM in all its complexities.
LARA’s President, Janet Neustein, represents Australia on the Worldwide LAM Patient Coalition (WLPC), an initiative of the LAM Foundation based in Cincinnati, Ohio. LARA has also been represented at international LAM conferences in the USA and Europe.
In 2013 Janet Neustein attended the inaugural Short Course in Interstitial Lung Disease in Sydney. In 2014, 2013 and 2012 she attended the LAM Foundation’s international LAMposiums in Chicago and Cincinnati. Executive member, Annette Hicks represented LARA at TSANZ conferences in Canberra in 2011 and Darwin in 2012. In 2007, LARA participated in the Asia Pacific Society of Respirology conference on Queensland’s Gold Coast.
Founding President of LARA, Heather Telford, attended LAM conferences in Stockholm, Cincinnati, and Udine. She and the Director of the NZ LAM Trust, Bronwyn Gray, attended the Awakening Australia to Rare Diseases Symposium in Freemantle Western Australia in 2011.
LARA’s funding of research initiatives is guided by Advisory Panel members: Prof Judith Black AO, A/Prof Mervyn Merrilees, Dr Helen Whitford, A/Prof Deborah Yates, Prof David Sonnabend and Dr Jeff Lindenmayer.
A small not-for-profit organisation, LARA is run by volunteers who include women living with LAM and others concerned to improve the prospects for women living with LAM. 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.
In August 2014 there are 98 women in Australia who are listed on the LARA database. Current membership of LARA stands at 30. Membership is open to women living with LAM, their friends and family members and anyone with an interest in LAM/LARA.