Welcome to the New Zealand LAM Charitable Trust
If you can't breathe, nothing else matters
The NZ LAM Trust is registered with the NZ Charities Commission: CC20304.
The Trust is a not for profit rare lung disease research and patient support group for New Zealand women diagnosed and suffering with Lymphangioleiomyomatosis.
Established in Auckland in 1999, the New Zealand LAM Trust is one of a number of patient and family organisations around the
world working alongside scientists, clinicians and researchers,
raising awareness about the disease Lymphangioleiomyomatosis and helping raise funds to
support research into its cause and ultimately its cure.
What is LAM ?
LAM is a rare, progressive lung condition affecting women generally between the ages of 25 to 45.
LAM, first described in the medical literature in the 1920's has recently been described as a slow moving metastatic neoplasm. Symptons include breathelessness, chest pain, cough, and lung collapse.
» OUR CHALLENGE
To help to transform the vision of a future without LAM into a reality
To intensify our efforts to raise funds for scientific research
To educate general practitioners to recognise early symptoms of LAM
To ensure that women get a timely and correct diagnosis
To identify and provide support for every LAM patient in New Zealand.
» OUR OBJECTIVES
To provide support for women diagnosed with LAM and their families
To become the source of information for women affected with LAM
To publish educational materials on LAM for all interested people
To raise awareness of LAM, to improve early detection and diagnosis
To maintain a database of persons throughout the country who have LAM
To foster and fund research aimed at finding a cause of and cure for LAM and ultimately, preventative measures
To sponsor conferences, workshops and scientific meetings related to LAM
To raise money to support the goals.
With support for New Zealand women suffering from LAM and fundraising for research as the central focus, the New Zealand LAM Trust is committed to the above challenges.
March 2019 Update - Latest Science and Research fundraising initiative to fight LAM
We urge supporters and all yoghurt lovers to buy the new Feijoa, Ginger and Vanilla yoghurt; proceeds of sales go to the Trust's science and research programme .
Available in all Countdown and New World Stores.
The Collective has joined forces with world-renowned chef Peter Gordon to create a delicious new gourmet probiotic yoghurt, with proceeds going to a charity close to his heart, The New Zealand LAM Trust. Its new Feijoa, Vanilla & Ginger yoghurt, brings together aromatic feijoa and vanilla with the punch deliciousness of ginger. These flavours are paired with The Collective's thick and creamy yoghurt.
The launch comes as part of The Collective's 'Chefs for Good' series, an initiative that raises money for New Zealand charities through collaborating with iconic Kiwi chefs. Al Brown and Josh Emett have already raised money for their chosen charities, Garden To Table and Melanoma New Zealand.
Peter has a long history of supporting The LAM Trust, which raises awareness of lymphangioleiomyomatosis (LAM), a rare lung condition affecting women between the ages of 25 to 45 years. "This is a charity close to my heart as it was set up by my good friend Bronwyn Gray as LAM affects someone in her family, in my greater whanau. One of my favourite memories is receiving a sack filled with feijoas when I was cooking a fundraising dinner for The LAM Trust. I made a feijoa, vanilla, and ginger compote to serve with one of the desserts, so it seemed the perfect inspiration for my yoghurt flavour," explained Peter.
For more reading see the spinoff.co.nz story covering the launch.
February 2019 Update - Rare Disease Day Award
Professor Mervyn Merrilees was awarded the inaugural Rare Disease Day Research Award in recognition of his significant contributions to rare diseases in New Zealand.
His research has focused on the rare progressive infiltrative lung condition called lymphangioleiomyomatosis (LAM) that affects women, usually between the ages of 25 to 45. Through processes yet to be understood, smooth muscle cells of unknown origin invade the lungs and increasingly compromise the transfer of oxygen, to the extent that lung transplantation may be required. There are currently 30 women with LAM in New Zealand, but likely that others remain undiagnosed.
Rare Disease Day recipients at Government House Wellington
Professor Mervyn Merrilees receiving his award from Governor-General Dame Patsy Reddy for his two decades of work in LAM Science
Professor Merrilees has been a long-term supporter of the LAM community. He has been involved with LAM research and patients in New Zealand for two decades, from the time the underlying genetic basis was discovered through to the recent rapid advances leading to clinical trials. The perspective that he has been able to bring to understanding LAM has been greatly helped by his wider investigations into the role of the extracellular matrix and inflammation in more common diseases, such as heart disease. Recently he co-authored a paper on LAM with colleagues at the University of Pennsylvania in which they presented findings to show that a new approach, involving stimulation of the immune system to attack LAM cells, may have promising potential as a new therapy.
Professor Merrilees is the Scientific Advisor for the New Zealand LAM Charitable Trust.
May 2018 Update
First anniversary of Imeleta Maddox's double lung transplant
The New Zealand Lam Trust congratulates Auckland LAM patient Imeleta Maddox on the first anniversary of her double lung transplant.
Imeleta received her new lungs in a nine hour operation at Auckland City Hospital on May 24 2017.
Very special thanks to her clinical and surgical team, to the wonderful work of Helen Gibbs transplant recipient coordinator, to the team at Greenlane and Auckland Hospitals and, of course, enormous thanks to the family of Imeleta's donor.
Imeleta's life with her 'new lungs' enables her to walk two or more kilometres each day, drive her car, meet with friends and, above all, enjoy life with her husband and two children.
LAM Research at Otago University.
The 2018-19 LAM scientific programme at the University of Otago is well underway. The NZ LAM Trust thanks our New Zealand and Australian connections who have donated the funds to make possible a new and exciting study titled. "Using DNA methylation profiling to investigate the origin of the LAM CELL".
Professor of Genetics and Pathology at Otago University, Professor Mike Eccles and his team led by Dr Erin Macaulay, Dr Aniruddha Chatterjee and Dr Chi Lynch-Sutherland are working on isolating pure LAM cells and studying their DNA in order to generate a profile that will hopefully lead the team to discover the cell of origin.
The LAM Trust thanks Professor Merv Merrilees in Auckland for his input to this work.
Dates for upcoming International LAM meetings - UK and USA
LAM Action Annual Meeting 2018 Saturday 9 June 2018 at Hilton Leeds City Hotel Leeds, United Kingdom
More details on www.lamaction.org.uk
Rare Lung Diseases Conference 2018 6-9 September 2018 in Cincinnati, Ohio
The 2018 International LAM Scientific Research and Patient Conference will take place in Cincinnati Ohio, USA this September.
Patients and their families from New Zealand and around the world are invited to check out details on the US LAM Foundation website: www.thelamfoundation.org The New Zealand LAM Trust looks forward to having a representative at each of these meetings;
New Zealand Dr Jilly Evans is currently working at the University of Philadelphia in Professor Krymskaya's lab.
Dr Evans sits on the Scientific Advisory Board of the US Foundation and we look forward to her next visit to new Zealand later this year.
World Wide LAM Awareness Month The World Wide LAM Awareness Month will be in June 2018
Dr Jilly Evans and Prof Vera Krymskaya
June 2017 Update - ATS Conference
LAM Trust Director, Bronwyn Gray recently travelled to Washington DC to attend the annual ATS meeting. This very large gathering of the American Thoracic Society held in May 2017, was an opportunity for American and World Wide lung specialists to update themselves about important research projects, new investigation and clinical research trials involving many common and less common lung conditions.
Among the more rare lung conditions was an opportunity to showcase LAM Investigation: A Poster presentation showing interim results of the collaboration between the Universities of Auckland (Prof M Merrilees) and the Universities of Pennsylvania (Professor Vera Krymskaya), Seattle and Chicago outlined results of current LAM research and we look forward to full publication of this collaboration later this year.
Poster Presentation at the Washington ATS Conference: pictured -- Professor Simon Johnson of Nottingham University UK, Post DocKatharina Meisel from University of Chicago and Post Doc Kseniya Obraztsova from the University of Pennsylvania)
Educating Pulmonologists at the ATS Conference
Over 16,000 pulmonologists from more than 90 countries gathered in Washington, DC, for the annual American Thoracic Society (ATS) Conference.
The LAM Foundation attended, educating physicians, researchers and clinic coordinators, building LAM awareness in this action-filled week., prior to the Annual LAM Foundation Patient and Clinical Conference, also being held in Washington at the end of June.
The month of June is Worldwide LAM Awareness Month (WWLAM). For the first time ever, the globally recognized Worldwide LAM Awareness Day, has been expanded to the entire month of June.
Rare disease advocacy, scientific progress and hope for a better future for women with LAM depends upon many people continuing to be involved in increasing awareness and continued fund raising;
Many LAM Patients and their families from all over the world support the work of their country's advocacy and research teams;
Here in New Zealand, LAM patient Imeleta Maddox from Green Bay in Auckland received new lungs in a double lung transplant at Auckland Hospital on May 24.
Imeleta is recovering very well and is now at Greenlane's "Hearty Towers " doing a month of post surgery rehabilitation.
The Cardio Thoracic Team led by Dr David Haydock and the NZ LAM Trust Board and its research and investigation group led, in New Zealand by Professor Merv Merrilees, wish Imeleta a speedy recovery and return to her family and to her new life.
Imeleta and her husband Brett Maddox
Invercargill woman, Lisa Wyeth is celebrating her 13th year post double lung transplant. The LAM Trust congratulates both Imeleta and Lisa and wish them well.
On June 26 New Zealander Dr Jilly Evans will join the LAM Investigation Team led by Professor Vera Krymskaya at the University of Philadelphia.
Jilly is a member of the US LAM Scientific Board and has had a close association with the New Zealand LAM Trust for 15 years.
She visits New Zealand a number of times a year and the Trust is very excited to know that Jilly will be working full time on novel ideas re LAM Cell proliferation and inhibition.
Jilly Evans, PhD, FRSNZ (Hon) has recently retired as the chief scientific officer and co-founder of US-based biopharmaceutical company PharmAkea Therapeutics. With more than 30 years' experience conducting biochemistry research, Jilly is a world authority in the eicosanoid field (molecules that control inflammation and immunity) with her research resulting in more than 100 peer-reviewed published papers.
August 2016: The International Rare Lung Diseases Research Conference & Lamposium 22-25 September 2016, Kentucky
The LAM Foundation and Rare Lung Diseases Consortium welcome you to attend the International Rare Lung Diseases Research Conference & LAMposium (RLDC.2016). This multi-faceted event aims to foster the advancement of rare lung disease research by enhancing communication between patients, clinicians and scientists.
Objectives of the RLDC.2016 are to:
1. Update world leaders involved in the study and treatment of rare lung diseases on the most recent clinical advancements
2. Review research developments in rare lung disease
3. Attract new investigators to rare lung disease research
4. Identify promising new research directions in rare lung diseases
5. Facilitate 'bench to bedside' dialog between researchers, clinicians, FDA, NIH, pharma and patients
REGISTER NOW THE RLDC.2016 WILL OFFER THREE EDUCATIONAL EXPERIENCES:
International Rare Lung Diseases Research Conference: One full day (Friday) of 20 minute "Rare Lung Disease Intensive" presentations offering current state of the art diagnostics and treatments for 15 rare lung diseases. On Saturday, workshops on pulmonary alveolar proteinosis, pulmonary Langerhans cell histiocytosis and genetic lung disease will focus on planning clinical trials.
19th Annual LAM Research Conference: Leading LAM investigators join early career scientists to discuss recent scientific progress, with a focus on lung matrix.
19th Annual LAMposium Patients, Family & Friends Conference: LAM and Rare Lung Disease patients, family and friends will attend a wide variety of educational sessions designed to inform and inspire. Topics range from disease and treatment fundamentals, research trial participation and oxygen therapy to exercise, fundraising and nutrition.
Many additional activities are planned including the Research Room, Scientific and Community Poster Reception, Rare Lung Diseases Clinic Director Congress, Rare Lung Disease Consortium Celebration Banquet and Breath of Hope Gala.
The following Rare Lung Diseases Consortium Partners will join us:
Castleman Disease Collaborative Network
Hermansky-Pudlak Syndrome Network, Inc.
Lymphangiomatosis & Gorham's Disease Alliance
Pulmonary Alveolar Proteinosis Foundation
Sjögren's Syndrome Foundation
Tuberous Sclerosis Alliance
April 2016: The New Zealand LAM Trust congratulates our Patron on her nomination for the position of Secretary General of the United Nations
The Right Honorable Helen Clark, The New Zealand LAM Trust's Patron, has been nominated this month by the New Zealand Government for the position of Secretary General of the United Nations.
Helen Clark is the first woman to lead the United Nations Development Programme, a role she took up in April 2009. She also chairs the United Nations Development Group, a committee made up of the heads of all UN funds, programmes and departments working on development issues.
The Trustees of the NZ LAM Trust congratulate our Patron who has been a constant supporter of the work of the Trust and has had an ongoing interest in LAM scientific research work since our beginnings in 1999.
The Right Honorable Helen Clark
February 2016 Update - Bronwyn Gray and Prof. Merv Merrilees to travel to the University of Philadelphia in April.
LAM Trust Director Bronwyn Gray and Professor Merv Merrilees from the University of Auckland will travel to the University of Philadelphia.
They will meet with Professor Vera Krymskaya in the first week of April and discussions will focus on new and exciting LAM research that has been in progress with the two labs.
The work involves T cells of the Immune System as well as further work on investigating the effectiveness of a molecule called V3 that may be helpful in slowing the growth of LAM cells in the lung.
Professor Merv Merrilees, University of Auckland and Professor Vera Krymskaya, University of Philadelphia
DONATE ON LINE:
Thank you to those supporters who have donated towards our ongoing research programmes by using the online donation system on our website.