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.
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
Auckland Marathon 2015 - Tonio and Bonnie raised $3500 for LAM
Bonnie and Antoine at the 2014 Auckland Marathon.
The Auckland Marathon was held on November 1st and our runners, Tonio Salles and Bonnie Knight ran a great Marathon on behalf of all of our LAM patients around New Zealand.
The Trust thanks Tonio and Bonnie for their great support and we thank all of those who made donations to our Marathon runners who ran to raise funds for our LAM Science and Research programme.
The total raised this year from Friends of LAM from Auckland, Wellington, London and Paris has just made it to our target of $3,500.00.!!!
The full amount of monies raised will be transferred to our LAM Scientific Research Fund and will be used for the ongoing investigation at the University of Auckland.
You may still donate to support LAM from the links below:
To sponsor Bonnie and Antoine and support LAM research:
September 2015 Update - International project funded by NZ LAM Trust progressing
The international collaborative project set up by Dr Merv Merrilees and funded by the NZ LAM Trust is now well under-way.
The aim of the project is to find out if a particular molecule, discovered by Dr Merrilees and colleagues in Seattle to slow the growth of cells and stimulate formation of elastic fibers, might be beneficial in lungs affected by LAM.
The project involves three laboratories. Dr Vera Krymskaya in Philadelphia, who has a mouse model of the disease and is providing her LAM cells with the defective LAM gene to Dr Tom Wight in Seattle. His laboratory is putting the gene for the elastin-stimulating molecule into the LAM cells, which are then being shipped back to Philadelphia for injection into mice to create LAM lungs. Lung tissue from those mice is then being shipped to Dr Merrilees in Auckland for analysis.
The first shipment has recently arrived in Auckland and investigations are now under way to determine if the lungs of these mice with LAM have been changed for the better.
Lulu ( Ning Jao), LAM Research technician working in Professor Merrilees' lab at the University of Auckland.
June 2015 Update - (Lulu) Ning Zuo working on a collaborative LAM project in the lab at the University of Auckland.
Prof Merv Merrilees with Lulu
A new collaborative LAM project funded in part by the NZ LAM Trust is underway at the University of Auckland.
Lulu (Ning Jao), a research technician is working in the laboratory of the Trust's Principal Investigator, Assoc Prof Merv Merrilees at the School of Medical and Health Sciences. The collaborative LAM Project involves the Universities of Auckland and Philadelphia, working with Dr Vera Krymskaya, in Philadelphia and with Professor Tom Wight at the Benaroya Research Institute in Seattle.
The investigation is focused on understanding changes to elastin in the LAM lung and seeking ways to preserve the elastic fibres.
June 2015 - Breaking News - FDA approves Rapamune to treat LAM.
The U.S. Food and Drug Administration approved Rapamune (sirolimus) to treat lymphangioleiomyomatosis (LAM).
Rapamune was originally approved in 1999 as an immunosuppressive agent to help prevent organ rejection. Because Rapamune's sponsor demonstrated that the drug may offer a substantial improvement over available therapies, it received breakthrough therapy designation.
April 2015 Update - 20th LAM Science and Patient Conference in Chicago.
From left: LAM Trustee Jen Shieff, LAM Trust Director Bronwyn Gray and Prof. Vera Krymskaya, Chair of the Basic Science Sessions
LAMposium 2015 was held in Chicago over a Friday to Sunday weekend, bleak outside, warm in every way inside.
Approximately 500 people attended at different times, including 130 women with LAM. The most memorable times were the patient / clinician slots each morning, with one clinician introducing a patient who also spoke about her experience of diagnosis and treatment.
There were social times on Friday and Saturday evenings where there was recognition of the efforts of women with LAM, their families and friends to raise research funds. At the gala on Saturday night, $US213,000 was raised in 20 minutes. Such enthusiasm and generosity.
Are we any closer than we were a year ago to finding a cure? Yes, I believe so. The researchers are still as fired up as they were when I heard them last, putting forward their theories and developing their ideas. Key ones for me included the idea that there might be an even better combination than Rapamycin (Sirolimus) and Simvastatin, which is having a remarkably good effect on so many women with LAM. Also, there may be answers in looking more closely at lipid metabolism, at the way proteases behave, at the RNA miR21, at auto-immune therapeutics, and even at Resveratrol.
A LAM cell line factory is being piloted which would enable researchers to see exactly what happens when certain therapies are applied, possibly without involving all those valiant mice.
I felt very hopeful as I flew away, and very grateful for the privilege of being at the 2015 LAMposium amongst all those courageous people. The women with LAM who I've met are among the most courageous people imaginable, as are the researchers. Their determination to find a cure is the most outstanding LAMposium memory for me.
New Zealand was represented by Jen Shieff and Bronwyn Gray.
Jen Shieff -Trustee: NZ LAM Trust
March 2015 Update - Film Night Fundraiser Thursday 26th February a success.
Professor Merv Merrilees
Thanks to all the LAM Trust supporters who came to the Movie Night Fund Raiser at the Bridgeway Theatre during Rare Disease Week at the end of February.
The Movie was sold out and the Trust raised $2,700.00 for the event; this amount will go in full to our Research Programme at the University of Auckland. Professor Merv Merrilees, Principal LAM Research Leader spoke briefly to the audience about the new and exciting LAM Collaboration between the Universities of Auckland, Philadelphia and Seattle.
Special Thanks to Carole Beu, of the Womens Bookshop on Ponsonby Rd, who donated the wonderful Book Raffle which was won by long time LAM Trust supporter Wendie Hall.
The 20th International LAM Science, Research and Patient Conference will be held in Chicago 26-29 March and the New Zealand LAM Trust will be represented by Director, Bronwyn Gray from Auckland and Board member, Jen Shieff from Turangi
November 2014 Update - Auckland Marathon.
Congratulations and thank you to our Marathon Runner Antoine Salles, Chef and owner of French Bistrot "Touquet" in Auckland City. Antoine ran the full Marathon in 4 hours, 2 minutes... and raised $3,100 for the LAM Trust.
Thank you to supporters of the LAM Trust for their donations and support for Tonio's great run! All monies donated have been tagged for our ongoing reasearch work at the University of Auckland.
LAM Chat with Dr Frank McCormack in Chicago
LAM Trust Director Bronwyn Gray chats to Dr Frank McCormack at the LAM Scientific and Patient Conference in Chicago 28-30 March 2014.
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.