LARA Links - Edition 1 Spring 2008

Apart from letting you know what we are doing, LARA Links aims to connect you to LAM news and women with LAM all over the world. Just click on the links below or visit the LARA website to find out more.

A not-for-profit organisation representing Australian and New Zealand women with LAM, LARA was established in 2006. Our twin goals are to raise funds for research and raise awareness of LAM.

Although LAM is very rare and often misdiagnosed, people all over the world (many of them women with LAM) are working to raise the profile of the disease, push for effective treatments, and ultimately, find a cure for LAM. For more about LARA, visit www.lara.org.au/about_us

Redesign of Website

LARA's new website is a work in progress. Please visit www.lara.org.au and let us know what you think. We hope to keep it up to date and relevant. Email us at admin@lara.org.au and give us your ideas.

Fundraising Achievements

Since LARA was established, we have come a long way. As a fully registered charity, we are legally entitled to fundraise and accept tax deductible donations. Over the past two years we've received grants, private donations and generous sponsorships. Some enthusiastic women with LAM have organised dinner dances, raffles, auctions, bbqs, an afternoon tea, and a letter writing campaigns, raising in excess of $20,000. Of course every donation over $2 is tax deductible and every dollar helps.

LAM Clinics

LAM Clinics have been running at St Vincent's Sydney and at The Alfred Melbourne for the past few years. Women attend the clinics every six months for lung function and six minute walk tests. Physicians collect and compare data at regular intervals. The clinics offer women with LAM opportunities to share their thoughts and experiences. Following the Melbourne clinic women gather for lunch and conversation. If you are not already attending a LAM clinic contact us for more information. Some States provide travel and accommodation assistance.

LAM Research News

Tissue Bank

In the USA and Europe a not for profit organisation called National Disease Research Interchange (NDRI) runs a system linking LAM patients with research laboratories. Women having lung transplants want to ensure their old lungs are put to good use. Having access to fresh LAM tissue is scientists' best hope of finding a cure for LAM. LARA would like NDRI to set up a similar system here, but low population densities and distances between cities in Australia and NZ limit our opportunities.

We need more women with LAM (or people with other rare diseases) to make the scheme viable. We are trying to create a LAM Asia-Pacific network. Based on the number of women with LAM registered on our database, there should be millions of women with LAM in Indonesia's population of 235.000.000! Click here if you wish to register your lungs for research.

Miles Trial

The LAM Foundation's MILES Trial is underway in the USA and Japan. This is the culmination of ten years of incredible effort, much of it driven by women with LAM. If it proves to be successful, the drug Rapamycin will be the first effective treatment for LAM. Click here for details.

Doxycycline Trial

A 'Doxy' trial is underway at Sydney's St Vincent's Hospital. By now you should have been contacted by Dr Anu Krishnan to see if you wish to register. So far 13 women have enrolled but more are needed to make the study scientifically robust. Travel and accommodation assistance may be available. Click here for details.

LARA Co-Funds Moir Fellowship

Dr Lyn Moir has returned to the University of Sydney following a six month fellowship to work with Dr Vera Krymskaya at the University of Pennsylvania Philadelphia. In 2002 Dr Krymskaya discovered that abnormal smooth muscle-like LAM cells invade the lungs when tuberous sclerosis complex proteins lose control of growth. Dr Lyn Moir's $50,000 fellowship was jointly funded by LARA and the New Zealand LAM Trust. Click here for Dr Moir's report.

VEGF-D Study in Sydney & Melbourne

VEGF-D is a protein which seems to be raised in women with LAM. To check this out, LARA's Medical and Scientific Advisory Board Members Prof David Sonnabend and Dr Jeff Lindenmayer are conducting a VEGF-D study. The aim of their study is to see if a VEGF-D blood test could diagnose LAM in its early stages. Pregnant and non-pregnant women without LAM are donating blood for the study. Click here to find out how you can help.

Conferences

LARA has been represented at the LAM Foundation's LAMposium in Cincinnati OHIO for the past three years. Visit http://www.thelamfoundation.org

In 2007 LARA's President, Heather Telford, and Vice President, Bronwyn Gray (also President of the NZ LAM Trust), were invited to join the LAM Foundation's Worldwide LAM Patient Coalition as LAMbassadors.

LARA is also actively involved with the LAM Treatment Alliance. Based at Harvard University USA, THE LAM Treatment Alliance is also active in Europe. Over the past two years LARA has been represented at conferences in Stockholm Sweden, Oxford and Brighton UK.

APSR Conference

In order to promote links with our Asia Pacific neighbours LARA had a stand at the Asia Pacific Society of Respirology (APSR) conference on the Gold Coast in December 2007. Leaflets about LAM were inserted in the APSR information packages and attracted many physicians to our booth. Many of them had never heard of LAM, some had seen one or two cases, and one physician from Japan had over 100 LAM patients!

To raise awareness of LAM, information sheets were inserted in 700 folders which were distributed at the Thoracic Society of Australia and New Zealand conference in Melbourne in March this year.

Future Plans

LARA and the New Zealand LAM Trust would like to hold another symposium in Australia. New Zealand has hosted three bi-annual symposia in 2000, 2002, and 2004. Virginia Northwood's bequest to LAM Australia funded a very successful meeting in the Blue Mountains in 2006. Unfortunately resources were not available to follow suit this year but we hope to raise sufficient funds to host another symposium next year.

Can you provide skills, time and/or fundraising for the symposium?  Please let us know.

LARA Links

If you would like to comment on this edition, or contribute to a future edition, please email us at admin@lara.org.au or edit@editorial.net.au