LAM Australia Research Alliance wishes women living with LAM, their loved ones, those who care for them, and their supporters all the best for the festive season and for the year ahead.
Please have in your thoughts and prayers brave Amy Evans of Queensland. Amy has now been on the lung transplant list for 43 weeks, waiting to replace the donor lungs which allowed her and her husband, Jeremy, to delight in the development of twin daughters, Dani and Jenni, from 1 year-olds when Amy was diagnosed with LAM, to 11 year olds who just graduated from primary school. The Evans boys, James and Tom, are 16 and 17.
For women living with LAM, turning the corner into a new year means adding another year of hope since the onset of the disease. It’s positive to report that an increasing number of LAM cases are responding to the drugs now available – chiefly everolimus and sirolimus. Research gives hope to women living with LAM, whether newly diagnosed, or having lived with LAM for many years. When research brings a better understanding of this strange, rare disease, targeted treatments will follow.
Fundraising for research is a chief objective of LAM Australia. Research is time-consuming and expensive. Over the years, we have been supported with major grants and with money raised in on-line campaigns and through many events. These include a film night, walkathons, a trivia night, a beach walk and BBQ, Entertainment Book and chocolate sales, a yogathon, a gym day, and COMING UP, the raffle of a quilt and an 80s dance party!
Raising funds has benefits beyond the monetary – it raises awareness of LAM and it empowers those who get involved. We hope you’ll be inspired by the fundraisers organised by Barbara Cameron and Kate Wingrave to play a part in raising funds for research.
Our top fundraiser, Kate Wingrave, and Donna Albertini are organising a fabulous dance night with popular band, The 80s Underground. To be held on Saturday 18 The February at the Leopold Hotel, in Bicton, Perth, the night will include a raffle, silent auction and door prizes. Proceeds will fund LAM research.
Barbara Cameron is selling tickets for a beautiful handworked quilt created by the Cobargo Quilting Group. The queen size cotton quilt will be raffled 22 December 2016 to raise funds for LAM research. Tickets are $2 each or 3 for $5. Email firstname.lastname@example.org to order tickets and advise of your payment to the LAM Australia Research Alliance bank account: 012-055 4926 67193. Alternatively, you can pay into Kristy Hope’s special raffle account: PayPal.me/kristyhopePayPal.me/kristyhope. Email Kristy to advise of your deposit and order tickets email@example.com.
News from our President, Dr Brian Oliver
With the generous support of the Roth Foundation supplementing money donated and raised more widely, LAM Australia is now funding the most exciting LAM research project proposed in Australia. Involving genomic research at the cutting edge of worldwide research, it is a collaboration of the world-leading Garvan Institute http://www.garvan.org.au/news/news/the-future-of-genomic-medicine-has-arrived-in-australia and the Woolcock Institute http://woolcock.org.au/lam-research/ The goal of the research is to identify and find a way to switch off the genetic code that causes LAM. Research findings may lead to earlier, more effective treatments.
Under my direction, pre-med students at the University of Technology Sydney (UTS) formed Students for LAM (SLAM) in 2015. SLAM has two aims: to raise funds for LAM Research and to provide plain English summaries of the latest LAM research projects worldwide. Stephanie Town stepped down mid 2016 to concentrate on her studies, and the students appointed a new chair, Michael Papanicolaou Michael.Papanicolaou@student.uts.edu.au. New students have joined the committee and more fundraising activities have been planned for 2017, including Cadburys chocolate fundraising sales, a trivia night, and a BBQ.
The Executive Committee of LAM Australia Research Alliance has decided to concentrate current fundraising efforts on creating a PhD scholarship. Ensuring that three years of work can be undertaken, this represents the best value for money we can get.
In 2017 the “Cure LAM” prize will be rolled out. Open to any student based in Australia, this prize will be awarded to the most innovative approach to Diagnosing / Treating / Curing LAM.
The committee needs help to achieve its objectives. We would like to co-opt additional members. Please get in touch if you would like to be involved.
Our warm thanks to Gabriel Roffey for her $800 donation to LAM Australia. We recently received a donation in loving memory of the Broomhead twins. Further donations have also been received. All gifts to LAM Australia Research Alliance are tax deductible and greatly appreciated.
At this time of year, we are very grateful to those who choose to donate to our worthy cause rather than to buy Christmas presents. One woman stands out because she decided several years ago that her grandchildren would learn the importance of charity if she became their role model by giving to LAM Australia Research Alliance on their behalf. To donate direct to LAM Australia Research Alliance our account number is 012-055 4926 67193. Be sure to email details to firstname.lastname@example.org so we can provide a receipt.
Fundraising through sales of Entertainment Books
Once more the extraordinary Kate Wingrave has raised close to $1000 through Entertainment Book sales. That’s on top of organising a fundraiser with Laura Kolomyjec at her gym, Genesis Fitness – Bentley, which raised $1100. Kate’s fundraising is getting off to a great start in 2017. She’s teaming up with Donna Albertini and others to organise an 80s dance party in Bicton. Kate, hopes her energy and enthusiasm will encourage others to help sell Entertainment Books. They make great gifts and LAM Australia gets $13 from every sale.
Living with LAM Thesis published
Congratulations to Denise Haylen on the publication of her insightful thesis after years of work.
Denise is planning to talk about her findings in Sydney and Melbourne in 2017.
Best wishes to world leading LAM physician and researcher, Joel Moss, who is recovering from a stroke.
We wish anyone living with LAM who is or has been unwell a very good recovery. Recent pollen incidents in Melbourne and Canberra may have challenged women living with LAM. Whether dealing with pollen, smoke, winter chill, or the high humidity of summer, it’s important to take the necessary precautions, which may mean staying indoors or reducing outdoor activity till the air clears.
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