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.
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.