Contact Us
+61 (0) 419 185 491
+61 (0) 411 816 444
PO Box 636 Bondi Junction
NSW 1355
Australia
admin@lara.org.au
LARA'S Objectives
-
> Promoting research
Fostering and funding research to discover the cause and cure and better treatment for LAM. -
> Educating physicians
Improving diagnosis and treatment of LAM by promoting knowledge and awareness of LAM to general practitioners and specialists. -
> Supporting women living with LAM
Providing information and assistance to women and their families. -
> Fundraising
Raising money to support our objectives - chiefly to fund research. -
> Networking
Collaborating with countries and organisations in our region to exchange information.
Major Donors
Macquarie Group Foundation
Roth Charitable Foundation
Mr Robert Gavshon
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
Peter Hersh, Loggica Pty Ltd
Peter Kelso
Saluting LARA Heroes
Prof Judy Black AO
NH&MRC Senior Principal Research Fellow & Head Cell Biology
Woolcock Institute of Medical Research
University of Sydney NSW
Prof Allan R Glanville MD FRACP
Medical Director of Lung Transplantation
Director of Thoracic Medicine
St Vincent's Hospital, Sydney.
A key member of LARA's Medical & Scientific Advisory Board, Prof Glanville has been quick to respond to queries about LAM. He advises other physicians treating LAM patients, reviews patients to clarify their diagnoses, and is up-to-date with the latest findings worldwide.
LAM Australasia Research Alliance (LARA)
The LAM Australasia Research Alliance (LARA) is a not-for-profit organisation run by volunteers. We are dedicated to improving the health prospects of women living with lymphangioleiomyomatosis (LAM). A progressive and potentially fatal disease, LAM is unique to women, typically affecting them from their mid 30s. Although they usually look healthy, women living with LAM are dealing with symptoms of varying severity. At its worst, LAM devastates the lungs and affects other parts of the body through uncontrolled cell growth.
 EFT, cheque or cash # 012-055 4926 67193 | All donations over $2 are fully tax deductible. Please advise us of your donation by emailing your name, address and email address to admin@lara.org.au. We will respond with our thanks and an official receipt. |
  |
RECENT RESEARCH FINDINGS
Frequency of Undiagnosed Cystic Lung Disease in Patients With Sporadic Renal AMLs
"About 10-12% of people who are discovered to have an incidental angiomyolipoma (AML) will have LAM—the others just have an incidental AML." Frank McCormack. READ MORE
Exercise is Medicine
Research into cell metabolism at Stockholm's Karolinska Institutet have published research into the efficacy of exercise. Changes in the DNA of previously inactive, but healthy people occurred when they exercised. These findings have tremendous implications for curing genetically based diseases like LAM.
Breakthrough in Lung Transplant Methodology
BRISBANE surgeons have performed an Australian first, repairing donated lungs before transplanting them into a Queensland grandmother. The new technique, performed at Prince Charles Hospital, is expected to increase lung transplantation rates in excess of 30 per cent READ MORE
Ground-breaking lamstatin research
LARA is funding LAM research at Sydney University's Woolcock Institute of Medical Research. Researchers are collaborating with colleagues elsewhere in Australia, New Zealand and worldwide.
Congratulations to Prof Norbert Berend, Research Director at the Woolcock Institute, on being awarded the Asian Pacific Society of Respirology Medal 2011.
The award recognised his work to advance respirology in the Asia-Pacific region, including major achievements in advocacy, teaching, clinical practice and leadership, enshrining excellence in respiratory research and research translation, and for the exceptional contribution made in the growth of the Asian Pacific Society of Respirology.
Have you had a flu shot?
The Australian Lung Foundation recommends you assess your risk of catching the latest strains of flu. http://www.influenzaspecialistgroup.org.au/
"I certainly recommend that people with a chronic disease, especially those with respiratory problems, have annual flu vaccinations as they will be more susceptible to an influenza infection. I emphasise that a flu vaccination is not a live virus (some vaccinations are) so they can't get the flu itself from a flu shot, although they may feel achey for a couple of days. They should discuss with their GPs having the pneumococcal and whooping cough vaccinations as well. Their partners and close contacts might consider having these injections too, to reduce the risk of transmission."
Jeff Lindenmayer, GP and LARA Medical & Advisory Board Member
NEWS AND EVENTS
WORLDWIDE LAM AWARENESS DAY FRIDAY 01 JUNE 2012Mark this day with a minute of mindful breathing at midday. With an estimated quarter of a million women worldwide living with LAM, this day will focus attention on lymphangioleiomyomatosis. LARA's two week Yogathon centres on Worldwide LAM Awareness Day.
LAMposium 2012More than 80 women living with LAM, their partners, physicians and scientists attended the annual meeting of the LAM Foundation in Cincinnati Ohi in April. Whilst most attendees were from North America, there were attendees from Mexico, Russia, Colombia, New Zealand and Australia.
TSANZ meeting 30 March - 04 April 2012, Canberra ACT
LAM was the focus of a paper presented by LARA Scientific & Advisory Board Member, Dr Helen Whitford of The Alfred Hospital at the annual meeting of the Thoracic Society of Australia and New Zealand. LARA was represented at the conference.
LAM Clinic at RPAH Sydney
Dr Tamera Corte is a consultan
t respiratory physician with clinical and research interest in LAM and other interstitial lung diseases. On the staff of Royal Prince Alfred Hospital, she is setting up a clinic and developing research collaborations.
Nevena Andric
Mara Rezo
Kristy Hope
Mary Canniffe
Heather Telford
Janet Neustein
If you have LAM, be sure to register with two US organisations:
- The LAM Foundation maintains a registry of women living with LAM worldwide.
- LAMsight callates LAM disease profiles
What to do if you think you might have LAM
- Educate your doctor. Most doctors, even respiratory physicians, have never come across LAM and know little about the disease. Print information page for your GP
- See our list, which is gradually being extended. Ask your GP to refer you to a respiratory physician with recent experience in treating LAM. List of thoracic specialists with interest in LAM
- If you haven't already done lung function tests, including DLCO, arrange these through your GP.
- Contact LARA to register your name (confidentially), request a call from someone who is living with LAM, and/or to receive our occasional newsletter, LARA Links.
- Keep as positive, active and fit as you can. (See IMPORTANCE OF PULMONARY REHABILITATION)
Advice for women newly diagnosed with LAM
"When I found out in 2008 that I had LAM, I panicked. Then a friend told me to look at the episode of Australian Story which focused on LAM. After watching I decided to call one of the women featured in the documentary. She was very reassuring. I'm passing on the advice she gave me because it helped me through a difficult time."
"Trust in your specialist but know that there will always be a second opinion available if you want it. The disease affects every woman differently. It may not be as severe for you as it can be. It's heartening to know that there is a lot of research going on to find a cure for LAM."
Leanne Smith, Grafton
The Chronic Disease Management (CDM) Medicare items on the Medicare Benefits Schedule (MBS) enable GPs to plan and coordinate the health care of patients with chronic medical conditions, including patients with these conditions who require multidisciplinary, team-based care from a GP and at least two other health or care providers. The items are designed for patients who require a structured approach to their care. If you think you might be eligible for CDM, talk to your GP.
Department of Health and Ageing - Chronic Disease Management (CDM) Medicare Items
TRAVEL INSURANCE Contact freelance broker, call Joanne Powers at Fitzpatrick Partners +61 3 8544 1619 or email joannep@fitzpatrick.com.au for the best policies to suit individual needs, including those with a pre-exisiting medical condition who are certified fit to travel. CHUBB provided a policy for a woman with LAM. Another traveller obtained insurance from Covermore in 2011.