LARA'S Objectives
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> Education
Promoting knowledge and awareness of LAM to practitioners and women with LAM -
> Information
Providing information for and about women with LAM -
> Support
Providing for the needs of women with LAM -
> Diagnosis
Facilitating diagnosis by raising awareness of LAM -
> Research
Fostering and funding research to discover the cause, cure and prevention of LAM -
> Fundraising
Raising money to support our objectives -
> Networking
Collaborating with countries in our region by exchanging information
Contact Us
LAM Australasia Research Alliance
4/209 Oxford Street
Bondi Junction 2022
Nevena 0419 185 491
Janet 0411 816 444
PO Box 636 Bondi Junction NSW 1355
Australia
OUR BEST WISHES FOR A SPEEDY RECOVERY TO ROS POLLARD. WE CONGRATULATE ROS ON BEING LARA'S STAR FUNDRAISER FOR 2009. AT PENOLA RACECOURSE, SOUTH AUSTRALIA IN DECEMBER 2009 HER HUGE FUNDRAISING EVENT RAISED GENERAL AWARENESS OF LYMPHANGIOLEIOMYOMATOSIS PLUS MANY THOUSANDS OF DOLLARS FOR RESEARCH.
The LAM Australasia Research Alliance is dedicated to improving the outlook for women with LAM in Australia, New Zealand and throughout the region.
WHAT CAN I DO IF I'VE JUST BEEN DIAGNOSED WITH LAM?
If you have been diagnosed as having LAM, you are probably confused, bewildered, and perhaps even angry. How could you have such a rare disease?! You may feel like you're 1 in a million. Your diagnosis may follow years of unexplained breathlessness, a persistent cough or chest pain. You may have been told you had asthma, bronchitis, emphysema or depression. It probably didn’t make sense until you found out about LAM.
LAM symptoms are often misdiagnosed and confused with asthma, emphysema or depression. Many women will never find out they have LAM. As yet there is no cure, but various ways of treating LAM are being trialled with some signs of success. Researchers are hopeful that studies of LAM and other diseases will result in a way of stopping LAM in its tracks.
DOES YOUR MOBILE PHONE HAVE ICE?
ICE [ In Case of Emergency ]
Think of how many names you have entered on your mobile, – it makes sense to identify the phone number of our next of kin, in case of emergency. A group of paramedics in the UK came up with a great idea - to load an easily recognisable name in your list of contacts to facilitate contacting family or next of kin - after an accident, for instance. They came up with ICE. We suggest you store one or more names under the name ICE on your mobile. ICE 1, ICE 2, ICE 3 as necessary. It could prove to be a lifesaver.
ACKNOWLEDGEMENTS
LARA thanks the many individuals who have supported its efforts financially and acknowledges the generous support of organisations. Their philanthropy enables us to fund vital research to find treatments and the cure for LAM:
- Anonymous Major Donor
- Henry H. Roth Charitable Foundation
- Macquarie Group Foundation
- Victorian Department of Health
- Hollick Wines
LARA thanks the professionals who work pro bono for this not-for-profit and recommends their services:
- Webhead
- Karen Riethmuller, Graphic Designer, KGR Design
- Auditor, Allan Hughan Accountant
- Public Officer, Peter Kelso of Bartier Perry Lawyers
And printer, Jagar Sprinting, for its continuing support.
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)
A ground-breaking pilot study being undertaken by LARA together with the NZ LAM Charitable Trust may lead to a treatment for LAM. Researchers at NZ’s Malaghan Institute will determine whether self-renewing cells are responsible for the persistence and progression of LAM. If this hypothesis is proven, this will lead to a larger study exploring the feasibility of treating LAM using the immunological therapies developed for treating cancer.