Congratulations Megan Fookes OAM of Rare Voices Australia. Megan
Fookes, co-founder of Rare Voices Australia was awarded the Medal of
the Order of Australia. She has dedicated the award to her late father
and to all adults, children and families who are doing their very best
to live with rare diseases.
On 29 February 2016, people living with or affected by a rare disease,
patient organisations, politicians, carers, medical professionals,
researchers and industry will come together in solidarity to raise
awareness of rare diseases.
Illustrious LAM researcher, Dr Lisa Henske of Brigham and Women’s
Hospital & Harvard Medical School, Boston USA was in Sydney in
Reporting on recent LAM meetings in the USA and UK, Dr Henske noted a
shift in thinking. Experts are envisaging where research will be in
five years’ time. “There is even talk of a cure for LAM,” she said.
To review the latest developments in research into
lymphangioleiomyomatosis, as well as its sometime partner disease,
Tuberous Sclerosis, Dr Henske was in Australia as the guest of
Tuberous Sclerosis Australia, for a weekend conference held at the
University of NSW 14-15 November and sponsored by Novartis.
Asked about the relevance of Australian research internationally, Dr
Henske likened all research to a fishing expedition. “You never know
what you’ll come up with, and we need lots of people to be fishing,”
Australian Bree Dixon addressed the full conference, recounting her
life journey with LAM and TS. Joining her in the audience for the
sessions focusing on LAM were women living with LAM who had travelled
from Queensland, Victoria, and New South Wales, their partners, LAM
experts, and committee members of LAM Australia Research Alliance.
Prof Allan Glanville of St Vincent’s Hospital Sydney and Assoc Prof
Brian Oliver of Sydney’s Woolcock Institute and UTS followed Dr Henske
in speaking about LAM.
Prof Glanville heads the Heart Lung Clinic at Sydney’s St Vincent’s
Hospital, which treats close to half of approximately 100 women living
with LAM in Australia. Stressing how important it is to make a correct
diagnosis, he presented some cases. He highlighted the case of a LAM
patient who deteriorated significantly until treated successfully with
LAM President, Assoc Prof Oliver outlined the research he heads at
Sydney’s Woolcock Institute, currently focusing on biomarkers.
While “sporadic” LAM occurs due to a spontaneous mutation, and affects
an estimated five to eight women in a million worldwide, a less rare
and usually less aggressive form of LAM may develop in women born with
For more about the LAM work of Dr Lisa Henske see www.henskelab.org.
If you are living with LAM, or are close to or treating someone who has this rare disease, we hope you will join us for the LAM educational symposium. As you can see from the flyer, world-renowned LAM and TS researcher, Dr Lisa Henske is reporting on her latest discoveries.
Due to generous funding from Novartis, the fee for attending is low. Travel assistance is available. Our thanks to Tuberous Sclerosis Australia for programming special sessions focusing on lymphangioleiomyomatosis (LAM).
If you have any questions, please email us or call/text Faith Wieland on 0424 901 953.
The Committee of LAM Australia Research Alliance
The ever-popular fun run is over 40 years old, with options of 3, 6 or 12km run or walk from Adelaide to Glenelg. This is the first time a LAM Australia team has participated.
To contribute to Michaela’s everyday hero campaign, go to https://give.everydayhero.com/au/michaela-13
Six women living with the rare lung disease, lymphangioleiomyomatosis (LAM), participated in a walk on Sunday 31 May in Sydney’s Centennial Parklands. The women were supported by approximately 60 family members and friends. Like the 101 women known to be living with the fatal disease in Australia (of an estimated eight in a million worldwide) they have sporadic LAM, which often strikes when women are in their 20s and 30s.
Sunday’s walk culminated in the labyrinth featured on ABC TV. Patron, Dr Linda Friedland, praised the healing powers of meditation that can be experienced in a labyrinth. Kristy Hope was 26 when she was diagnosed nine years ago. She has experienced breathlessness, multiple lung collapses and other dreadful symptoms. “Any woman can develop LAM – she could be your mother, your daughter, your sister, or you,” she said. “Raising awareness is crucial because LAM is often misdiagnosed, delaying treatment.”
Marking the 5th Worldwide LAM Awareness Day, the walk raised funds for research. “With government funding hard to come by, the onus is on not-for-profit groups like LAM Australia Research Alliance to attract donations. Over the past few years, we have raised more than half a million dollars for research at Sydney’s Woolcock Institute,” said Janet Neustein, President. “More work is needed to speed diagnosis and develop better treatments.”
The AGM of LAM Australia Research Alliance was held on 01 June 2015, Worldwide LAM Awareness Day. Dr Brian Oliver, Head of LAM research at the Woolcock Institute, replaced Janet Neustein as President. Janet had served on the Executive continuously since she helped found it in 2006. Michael Neustein continues to serves as Treasurer. The committee includes two past members, former Vice President , Melanie Hawyes and Pat Evans; and two new members, Faith Wieland and Yasuko Wilson.
In Brisbane Sarah Brice organised a sumptuous afternoon tea. Women who are living with LAM, their families and friends attended.
In Sydney the second annual STEPPING OUT FOR LAM walk in Centennial Parklands was followed by talks from Patron, Dr Linda Friedland, Kristy Hope and Janet Neustein.
To date the two events have raised over $6000 for LAM research, with donations still coming in – an excellent result.
Many of the women living with LAM in Melbourne (and a few from elsewhere) gathered for lunch after their six monthly check up at The Alfred in January 2015