Contact Us

LAM Australasia Research Alliance

Janet +61 411 816 444

PO Box 636 Bondi Junction NSW 1355
Australia

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

View all our Acknowledgements

Saluting LARA Hero
Professor 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. Variable in its impact, LAM devastates the lungs and affects other parts of the body through uncontrolled cell growth. Your tax deductible donation will fund vital medical research to improve scientific understanding of genetic disease processes and help find a cure for LAM.

DONATE NOW

You can play a large or small part in finding a cure for LAM. There are three ways of donating:

EFT, cheque or cash deposits in ANZ account # 012-055 4926 67193
LARA at Everyday Hero
PayPal

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.

LARA’s new Executive has already met twice since being voted into office on 17 November 2011. L – R: President, Janet Neustein; Treasurer, Mary Canniffe; Vice President, Annette Hicks; Secretary, Pam Sonnabend

FUNDRAISING FOR LAM RESEARCH

Many individual fundraising efforts are currently helping to fund research into LAM in Australia. READ MORE

The family of a woman diagnosed with LAM 21 years ago, invited friends and family members to pay for the privilege of attending their Xmas party. And asked them to donate to LARA's Research Fund in lieu of buying Xmas presents. Everyday Hero sites are raising funds. Recently diagnosed, Erin Dasczyk, has created her own Everyday Hero site and raised over $4000 in three weeks.

At an Aussie Masters Swimming Carnival held at Port Macquarie on 05 November, her swim mates sponsored Penny McKee in: 50m backstroke, breaststroke and freestyle, 100m freestyle and the 50m women's freestyle relay. Penny comments, "It was great fun! My friends were all very interested and supportive of the fundraising. Now they know about LAM and LARA they are keen to do more. It is good aligning LAM to swimming because of the breathing involved!"

A grandmother decided to donate to LARA on behalf of her many grandchildren and to tell them why she had chosen a worthy cause to receive a gift at Christmas time.

Run 4 LAM 30 people particpated in City to Surf events in Perth and Sydney in 2011, raising over $4000 for LAM research through donations to Everyday Hero. Well done! Our thanks to Dr Lyn Moir of the Woolcock Institute and Penny McKee's sister, Lillian Longford, who ran in Sydney; and Derek Paton and his WA Fostering Services team.

If you want to help us fund research, we are happy to offer assistance with your campaign. Just email admin@lara.org.au.

RESEARCH

LARA is funding LAM research at Sydney University's Woolcock Institute for Medical Research, where ground-breaking lamstatin research is progressing. Researchers are collaborating with colleagues lsewhere 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.

Kate Wingrave's Story

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

LARA AGM 17 November 2011
The fourth AGM of LARA was held at the Woolcock Institute. Director of the NZ LAM Trust, Bronwyn Gray, reported on recent developments in LAM research in NZ and worldwide. Founding President, Heather Telford, stepped down after five years of countless achievements as President. The new Executive has two members of the former Executive in new positions. Janet Neustein is President, Annette Hicks is Vice President, Mary Canniffe is Treasurer, and Pam Sonnabend, Secretary.

Plaque Unveiling at the Woolcock Institute 17 November 2011
In recognition of the generosity of major donors and the fundraising efforts of LARA, Prof Judy Black, NH&MRC Senior Principal Research Fellow and Head of Cell Biology at the Woolcock Institute of Medical Research unveiled a plaque to be affixed to the research laboratories where scientists are working to solve the mysteries of LAM.

LAM Clinic at RPAH Sydney
Congratulations to Dr Tamera Corte on the recent birth of Daniel. We welcome Dr Corte to LARA's Medical & Scientific Advisory Board. A consultan

t respiratory physician, she has a specific 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. Dr Corte is on maternity leave until 2012.

Women with LAM

Nevena Andric

Mara Rezo

Kristy Hope

Mary Canniffe

Heather Telford

Janet Neustein

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.
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)

What Can I Do if I've Just Been Diagnosed With LAM?

LAM Info Sheet

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

Help LARA's fundraising efforts with the Entertainment Book

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.