Contact Us
| Janet | 0411 816 444 |
| Marion | (03) 5023 2551 |
| Nevena | 0419 185 491 |
| Ros | 0414 600 299 |
PO Box 636 Bondi Junction
NSW 1355
Australia
admin@lara.org.au
LARA'S Objectives
- > Funding research to find a cure for LAM
- > Raising awareness of LAM
- > Supporting women living with LAM
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.
Dr Jeffrey Lindenmayer, of LARA's Medical & Scientific Advisory Panel, swapped a successful career as a General Practitioner, for a new career in medical research. After studying Microbiology, Jeff embarked on LAM research in February 2013 at Peter MacCallum Cancer Centre, Melbourne.
Patron
Bettina Arndt
Medical & Scientific Advisory Panel
Prof David Sonnabend (Convenor)
Prof Judith Black AO
Dr Tamera Corte
Prof Alan Glanville
Dr Jeffrey Lindenmayer
A/Prof Mervyn Merrilees
Dr Helen Whitford
A/Prof Deborah Yates
Executive
President
Janet Neustein
Vice President
Annette Hicks
Secretary
Michael Neustein (Acting)
Treasurer
Annette Hicks (Acting)
Committee
Nevena Andric
Marion Lang
Ros Pollard
Kate Wingrave
Public Officer
Peter Kelso
Hon Auditor
Peter Hersh, Logicca P/L
Founding President
Heather Telford
Director, NZ LAM TRUST
Bronwyn Gray
LAM Australasia Research Alliance (LARA)
LAM Australasia Research Alliance (LARA) is a not-for-profit organisation run wholly by volunteers. Our mission is to improve the health prospects of women living with lymphangioleiomyomatosis (LAM). A fatal disease, LAM is unique to women. Symptoms typically appear during their 20s and 30s ("the childbearing years"), but are often misdiagnosed initially. We currently know of 83 women living with LAM in Australia, but experts expect there are many more. Although women living with LAM usually appear to be healthy, they must deal with challenges of varying severity. LAM progressively devastates the lungs and affects other parts of the body through uncontrolled cell growth. LARA's primary goals are to raise funds for research to find a cure for LAM, to increase awareness of LAM, particularly in the medical profession, and to support women living with LAM.
 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. |
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Check out Phil Lang's Marathon for LAM at everydayhero.com.au
Phil and his wife Megan are setting out in Geelong, and travelling through Country Victoria to Mildura by car and on foot. Their dual purpose is to raise awareness of LAM and to raise funds for vital research to find a cure for LAM. Their marathon will culminate in a gala fundraising event in Mildura on WORLDWIDE LAM AWARENESS DAY, 01 JUNE 2013.
TRAVEL ALLOWANCES
Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS)
In most parts of Australia transport and travel assistance is available to people who cannot use or have difficulty using public and/or private transport, or who are disadvantaged by distance. For example, in NSW IPTAAS is a subsidy program providing financial assistance towards travel and accommodation costs for people (and eligible escorts) who have to travel long distances to access specialist treatment not available locally. Patients travelling at least 100km each way, or at least 200km per week cumulative distance, are eligible to apply for IPTAAS subsidies.
Have you had a flu shot this year? Plus Pneumovax 23® to protect you from pneumonia.
In 2013 the Australian Federal Department of Health and Ageing recommends:
- A dose of Pneumovax 23® should be given to adults at 65 years of age. Every effort should be made to provide a dose to anyone aged ≥65 years who has not previously received a dose of Pneumovax 23®.
- For non-Indigenous adults aged ≥65 years, a second dose of Pneumovax 23® (to be given ≥5 years after the first dose), is recommended for those who have a condition that predisposes them to an increased risk of invasive pneumococcal disease.
- A second dose is no longer recommended for those without a predisposing condition.
"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 as some vaccinations are, so they can't get the flu itself from a flu shot. However, they may feel achy 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, LARA Medical & Advisory Panel
THANK YOU
Special thanks to the Roth Foundation for leading the way in funding research into lymphangioleiomyomatosis (LAM) in 2013.
Many thanks to everyone who has assisted LARA’s work, officially or unofficially - raising or contributing funds for research into LAM, increasing awareness of this rare female disease within the medical profession and the general public, and improving the health prospects of women living with LAM.
LARA salutes the Royal Flying Doctor Service. Recently the RFDS raised awareness of LAM with a story mailed to 27,000 households. Read the article.
RESEARCH NEWS
mTOR has another crucial function
In February 2013, The LAM Foundation reported that two scientists it funds, Dr Issam Ben-Sahra and Dr Brendan Manning, have published new findings in Science. They have shown that mTOR, the cellular growth switch which is stuck in the ‘on’ position in LAM, also controls the synthesis of nucleotides, the building blocks for RNA and DNA. More about the "cellular growth switch" report by Drs Ben-Sahra and Manning in Science.
Mouse model of LAM facilitates drug tests
LARA Medical & Scientific Panel Member, Associate Professor Mervyn Merrilees of Auckland New Zealand, is continuing collaborative studies on a mouse model of LAM with Associate Professor Vera Krymskaya at the University of Pennsylvania. Recently this research was published in Science Translational Medicine (see NZ LAM Trust website: http://www.lam.org.nz/pub_Oct2012_ScTrMed-Combined.pdf). This model of LAM is proving to be exceptionally valuable, and will allow the testing of combination therapies. Combination therapy, with the simultaneous use of multiple drugs, is emerging as a promising direction for LAM treatment. The mouse model is improving understanding about how LAM develops, enabling relatively rapid initial assessment of the efficacy of various combinations of drugs.
Tracking abnormal cell growth
In February 2013, Jeff Lindenmayer, a member of LARA's Medical & Scientific Advisory Panel, traded a successful career as a General Practitioner, for the challenges of medical research at Peter MacCallum Cancer Centre, Melbourne. Working with the fruit fly, drosophila, Jeff hopes to identify combinations of mutations which trigger the abnormal cell growth, invasion and metastasis (spread to distant sites in the body) which occurs in cancer and in LAM. More than 10 years ago, researchers in America used drosophila to identify mutations of the tuberous sclerosis genes TSC1 and TSC2 as a cause of LAM. Current investigations around the world hope to identify more abnormal genes, proteins or metabolic pathways in LAM, possibly leading to new drugs for use in combination with rapamycin. Jeff's work combines drosophila mutations in TSC and Tor genes with a common cancer mutation known as Ras to investigate what triggers LAM cells to move to the lungs, and why some women with LAM deteriorate more rapidly than others.
Study finds life expectancy 20+ years post LAM diagnosis
A study published in LUNG in September 2012 and reported in the LAM Foundation's "Currents" gives hope to women living with LAM:
"Dr. Nic Oprescu, formerly of the University of Cincinnati*, conducted a study to determine the clinical predictors of mortality in a population-based registry of US LAM patients. The data was derived from the medical history and disease manifestation questionnaire completed by self-identified LAM patients in The LAM Foundation Registry. The study demonstrates that the median survival time for LAM patients in the United States is 29 years from symptom onset and 23 years from diagnosis, much longer than previously described. Age at disease onset, smoking status, race, presence of tuberous sclerosis, occurrence of pneumothorax and pregnancy did not demonstrate an association with survival or transplant. Greater age at presentation and presence of angiomyolipoma were associated with less risk of mortality. The outcome for patients who reported weight loss and those who required oxygen therapy was less positive. Dr. Oprescu believes that this data has important implications for life choices and treatment decisions regarding medication use and lung transplantation for patients with LAM. The study appeared in LUNG in September, 2012.”
* Dr. Oprescu is now at PeaceHealth Southwest Washington Medical Center in Vancouver, Washington USA
Dr Frank McCormack and his colleagues have released a thought-provoking paper reclassifying LAM.
Lymphangioleiomyomatosis - Calling It What It Is: A Low-Grade, Destructive, Metastasizing Neoplasm
Dr Tamera Corte of LARA's Medical & Scientific Advisory Board cautions that this recent publication (attached) describes an ongoing controversy:
"Dr McCormack certainly makes some important points describing the likeness between LAM and cancer, including the relationship between LAM and TSC gene mutations, metastasis and remote tissue destruction, as well as the findings that LAM cells exhibit cancer cell metabolism and use lymphangiogenesis as a strategy for metastatic spread. However, the word 'cancer' comes with many implications and negative associations for patients and their families. I think it is difficult to make a big change in nomenclature such as (McCormack) suggests in the absence of a Consensus Statement from a working group of world leading physicians and histopathologists. This is a very difficult and controversial area." Tamera Corte, 21 December 2012.
New mouse model of debilitating lung disease suggests potential treatment regimen
October 3, 2012
The American LAM Foundation reports: LAM, short for pulmonary lymphangioleiomyomatosis, affects about 1 in 10,000* women of childbearing age and is characterized by proliferation of smooth muscle-like cells in the lung, destruction of lung tissue, and growth of lymphatic vessels. The disease manifests itself in a wide variety of ways, so it is sometimes difficult to diagnose and there is no cure. The disease is caused by inactivation of either of two genes, TSC1 or TSC2, but to date no animal model has been able to replicate the pathologic features those mutations produce in humans.
(* The LAM Foundation estimate that LAM occurs in 1 in 10,000 women of childbearing age decreases when the age range is extended. Others think LAM occurs in only one in half a million.)
Read more at: http://medicalxpress.com/news/2012-10-mouse-debilitating-lung-disease-potential.html#jCp
Investigating genetic epidemiology of LAM
David J Kwiatkowski of Brigham and Women's Hospital, Boston, Massachusetts USA is conducting research into the Genetics of LAM. Saliva samples are being collected from c 2000 people, including women living with LAM and their close relatives in the USA and around the world. The saliva samples will be processed into DNA and detailed genetic analyses performed seeking genes which may be associated with LAM development. Genome studies of this kind have the potential to reveal a genetic variation associated with a disease. Many thanks to Australian women living with LAM for providing saliva samples for the study.
READ MORE ABOUT LAM RESEARCH
Order 2013-2014 Entertainment Books from LARA now.
NEWS AND EVENTS
LAM AWARENESS DAY: 1 JUNE
LARA'S EXECUTIVE & COMMITTEE MEET BY PHONE
Dispersed around Australia, the LARA committee meets by teleconference. President Janet Neustein, Vice President/Acting Treasurer Annette Hicks and Acting Secretary Michael Neustein meet in Sydney for conference calls with Marion Lang in Mildura, Ros Pollard and Nevena Andric in Melbourne, and Kate Wingrave in Perth. In between teleconferences, email meetings keep us all up with the action.
LARA MEETINGS
In January 2013, President, Janet Neustein, met women living with LAM (WLWL) in Hobart and in Melbourne. We agreed that empathy makes us all feel linked in a sisterhood dealing with a rare disease. In Melbourne on 02 November, WLWL lunched at the home of committee member, Nevena Andric after their six monthly clinic at The Alfred. When three women living with LAM In Perth met with Janet Neustein in November, Janet and committee member, Kate Wingrave met in person for the first time after two years of phone calls and emails. In October 2012 LARA hosted a special morning tea in Sydney. Guest speaker, Denise Haylen RN, spoke about her PhD research into Living with LAM. Her study is thought to be the first of its kind.
WLWL all over Australia provided saliva samples for the international research project aiming to discover genetic factors associated with LAM.
Alegra with Kristy and Kai 28.10.12 at LARA morning tea.
Melbourne women with Denise Haylen after regular LAM clinic at The Alfred, Nov 2012.
READ MORE NEWS
Nevena Andric
Mara Rezo
Kristy Hope
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-existing 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.