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Sunday 1 November 2015, Bonnie and Antoine running the Auckland Marathon for LAM NZ.



Bonnie and Antoine at the 2014 Auckland Marathon.
French Chef and owner of Touquet Restaurant in O'Connell St, Auckland, Antoine Salles will run the 2015 Auckland Marathon this year with his partner Bonnie Knight.

Antoine and Bonnie are running the Half Marathon on November 1st to support the continuing LAM research programme at the University of Auckland. Antoine ran the Full Marathon for the LAM Trust in 2013 and 2014 and this year, Bonnie, who works for Paymark, will run in support of LAM too.

Donations from supporters from New Zealand and around the world for our two runners have begun to arrive into the NZ LAM Trust Donation site. You can donate now from the link below:


To sponsor Bonnie and Antoine and support LAM research:

Option 1: Directly to LAM via our online donation page.

Option 2: via Paypal

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June 2015 - FDA approves Rapamune to treat LAM

FDA News Release.

The U.S. Food and Drug Administration approved Rapamune (sirolimus), to treat lymphangioleiomyomatosis (LAM), a rare, progressive lung disease that primarily affects women of childbearing age. This is the first drug approved to treat the disease.

LAM is characterized by an abnormal growth of smooth muscle cells that invade lung tissues, including the airways, and blood/lymph vessels that cause destruction of the lung, resulting in airflow obstruction, and limiting the delivery of oxygen to the body. LAM is a very rare disease. According to the U.S. National Library of Medicine, only between two and five women per million women worldwide are known to have the disease.

Rapamune, which is available as both a tablet and an oral solution, was originally approved in 1999 as an immunosuppressive agent to help prevent organ rejection in patients 13 years and older receiving kidney transplants. Because Rapamune's sponsor demonstrated that the drug may offer a substantial improvement over available therapies, it received breakthrough therapy designation. It also received a priority review, which provides for an expedited review of drugs that have the potential to provide a significant improvement in safety or effectiveness in the treatment of a serious disease or condition. Rapamune also received orphan product designation for this indication because LAM is a rare disease or condition. Development of this drug was also supported in part by the FDA Orphan Products Grants Program which provides grants for clinical studies on safety and/or effectiveness of products for use in rare diseases or conditions.

"Different FDA programs, such as orphan product designation and breakthrough therapy designation, provide sponsors with financial incentives and access to increased interactions and advice from FDA to facilitate development and timely approval of innovative treatments for rare diseases, which might not otherwise be developed," said John Jenkins, M.D., director of the Office of New Drugs in the FDA's Center for Drug Evaluation and Research. "These kinds of special programs make it possible for FDA to help drug manufacturers get life-saving drugs to the people who need them much more quickly."

The safety and efficacy of Rapamune for treatment of LAM were studied in a clinical trial that compared Rapamune with an inactive drug (placebo) in 89 patients for a 12-month treatment period, followed by a 12-month observation period. The primary endpoint was the difference between the groups in the rate of change in how much air a person can exhale during a forced breath in one second (forced expiratory volume in one second or FEV1). The difference in the average decrease in FEV1 during the 12-month treatment period was approximately 153 mL. After discontinuation of Rapamune, the decline in lung function resumed at a rate similar to the placebo group.

The most commonly reported side effects associated with Rapamune for the treatment of LAM were mouth and lip ulcers, diarrhea, abdominal pain, nausea, sore throat, acne, chest pain, leg swelling, upper respiratory tract infection, headache, dizziness, muscle pain and elevated cholesterol. Serious side effects including hypersensitivity and swelling (edema) have been observed in renal transplant patients.

Rapamune is made by Wyeth Pharmaceuticals, Inc., a subsidiary of Pfizer, Inc., Philadelphia, Pennsylvania.

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December 2014 - LAM Biomarker Innovation Summit.

On November 13 -15 an exceptional group of biomarker scientists with diverse expertise gathered in Atlanta, GA, at the LAM Biomarker Innovation Summit. This meeting was years in the planning and generous funding by major donors, industry partners and the LAM community who made it a reality. The two day meeting was launched with a powerful presentation by a woman with LAM expressing what it means to live with LAM every day and how new biomarkers could help her make better decisions about her health and care plan.

With the needs of patients in mind, the scientists then participated in a series of presentations and small group discussions focused on the four types of biomarkers: diagnostic, predictive, prognostic and surrogate. Through their collaborative effort, new ideas began to emerge in the areas of imaging, validating diagnostic approaches, composite scoring and new ways to analyze historical data and tissue samples. Equally importantly, new relationships were formed across specialties and organizations that may one day lead to new LAM research projects.

The Biomarker Innovation Grant (BIG) will offer funding to scientists with LAM biomarker research ideas and will be awarded in 2015. More information will be available about the Summit and BIG grants in December.

A special thank you to the many generous donors including John Adler, the LAM Community, Pfizer, Insmed and Novartis for supporting this outstanding effort.

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2015 International LAM Annual Conference.

The 2015 International LAM Scientific and Patient Conference will take place in Chicago, USA, from March 27th to 29th 2015.

Find out more on the LAM Foundation USA website.

Registrations open in January 2015.

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October 2014 Tonio to run the Auckland Marathon for LAM.

For the second year in a row Antoine Salles, Chef and owner of French Bistrot "Touquet" in O'Connell St in Auckland City, will run the Auckland Marathon to raise funds for LAM.

Tonio will run the full Marathon on behalf of women suffering with the rare lung disease Lymphangioleiomyomatosis... LAM.
Please support Tonio here by making your donation which will go in full to the University of Auckland's LAM Research Programme.




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October 2013 LAM NZ Update

The LAM Trust invited you to the Annual Gift Of Music Charity Concert by the Renowned Concert Pianist Mi-Yeon I.

Founded by Mi-Yeon I, the aim is to contribute and reach out to the community through music. All profits made from the Gift of Music concerts are donated annually to various charities in New Zealand. This year's "Gift of Music", performed on Friday 20 September at the University of Auckland's School of Music benefited Mi-Yeon's chosen Charities: The NZ LAM Trust and Child Poverty Action.

The LAM Trust wishes to thank Mi-Yeon for her generosity and support for our work. It was such a wonderful concert and we hope to try to work on a very special house concert when Mi Yeon is back in New Zealand... sometime next year.

Further information on Mi-Yeon can be found on her website www.miyeoni.com.

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September 2013 LAM NZ Update

Associate Professor Janette Kay Burgess

Following on from the very successful Short Course on Rare Lung Disease, hosted by the Australian Lung Foundation on 9 and 10 August in Sydney, the NZ LAM Trust has invited Professor Janette Burgess from the University of Sydney to visit Professor Merv Merrilees at the University of Auckland, to continue their collaborative work on the extra cellular matrix.

Dr Burgess, an international pioneer of the work on the extra cellular matrix and its role in airway disease presented from her particular area of expertise, the molecular and cellular biology of lung disease; both investigators have a major focus on interstitial lung disease and Dr Burgess welcomes the opportunity to work with the LAM Trust's principal investigator Professor Merrilees in Auckland.

The visit will take place in October and the Trust thanks its donors for the funding to make this on going collaboration possible.

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June 2013 LAM NZ Update

LAM Therapeutics launches operations to develop drugs for rare lung disease, Lymphangioleiomyomatosis (LAM)

LAM Therapeutics, the first biopharmaceutical company dedicated to identifying and developing drugs for the treatment of Lymphangioleiomyomatosis (LAM), announced today that it has closed a Series A financing with private investors to launch operations. Proceeds from the financing will be used for identification of clinical stage drugs with potential activity against LAM and to conduct clinical trials.

Read more on LAM Therapeutics website...

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May 2013 LAM NZ Update

The Impact of Rare Diseases: in New Zealand and Internationally.

Rare Diseases are conditions that affect a small portion of the population but are often chronic, progressive, degenerative, life threatening and disabling. It is generally accepted that "Rare" disorders are those that affect fewer than 1 person per 2000 people in New Zealand and in most countries globally.

While individual rare diseases are uncommon and disparate, collectively, there are approximately 7000 different types of rare diseases and disorders affecting an estimated 350 million people worldwide.

Despite the progress that has been made over the past few decades to help improve the quality of life for patients and their families managing these complex diseases, there are still significant gaps in care and barriers facing the community at large.

The results of a recent Rare Disease Impact Report Survey completed by Shire Human Genetic Therapies in the USA and the UK, published 1000 responses from rare disease sufferers and has revealed that:

  • It takes on average, more than seven years in the US and five years in the UK for a patient with a rare disease to receive a proper diagnosis.

  • Physicians (both primary care and specialists) often don't have the time, resources and information to properly diagnose/ manage patients with rare diseases , compared to more common diseases.

  • Before a definitive diagnosis, a patient typically visits up to eight physicians ( four primary care and four specialists) and receives two to three misdiagnoses.

  • Due to the uncertainty, the lack of available information, resources and economic strains, rare diseases take a major emotional toll on patients and their caregivers.

  • For those rare disease patients where treatment options are limited, overall, they worry more,feel more depressed, interact less and feel more isolated from family and friends, compared to patients with rare diseases for which there are available treatments.

    * * *

    Studies by ( S. Johnson et al, 2006 ) of New Zealand and Australian women and the diagnosis of Lymphangioleiomyomatosis (LAM) showed that the average time from presentation of respiratory symptoms until the diagnosis of LAM was seven years in Australia and in New Zealand six and a half years.

    LAM patients have reported that they have been invariably misdiagnosed as having an unusual type of asthma, or "exercise induced asthma".

    Ongoing work by New Zealand and Australian LAM patient support and advocacy groups, believe that these figures have improved over the past six years and women with LAM are being diagnosed with greater accuracy and frequency.

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    April-May 2013 LAM NZ update

    Scientific Director of the American LAM Foundation, Dr Frank McCormack.

    The Annual LAM patient and scientific meeting was held in Cincinnati, Ohio, USA, April 12/13/14 2013.

    More than 100 women with LAM from a dozen countries and more than 100 scientific researchers gathered at this year's research and patient educational conference.

    Scientific Director of the American LAM Foundation, Dr Frank McCormack's opening words continue to give hope to the women attending the meeting and to all those women with LAM around the world.

    "The pace of discovery in LAM rivals any in science. Breakthroughs in the genetic and molecular pathways responsible for disordered cellular growth in LAM, have revealed many promising therapeutic targets. The first randomised trial based on these seminal research findings was completed in 2011 and a therapy is now available. These astounding advances are a credit to the community of LAM families who have demonstrated the foresight to organise, participate enthusiastically in research studies, and engage the scientific community through research funding and scientific meetings such as this one."

    New Zealand's LAM community was represented at the 16th annual conference in Cincinnati by Bronwyn Gray, Director of the NZ LAM Trust.


    San Diego based New Zealander Dr Jilly Evans convened and coordinated the two hour Poster Session and Professor Vera Krymskaya, senior LAM research scientist presented her latest findings.

    This year's conference covered exciting presentations in basic scientific and clinical areas while sessions for LAM patients and their families were presented concurrently. At the beginning of each scientific session, a LAM patient addressed the scientists and doctors and spoke of her diagnosis and her personal experiences of living with LAM. Patients, as always, were encouraged to talk with the doctors and the researchers at all times throughout the three day meeting.

    The two way communication is a major feature of the Cincinnati meetings and offers vital and valuable opportunities for learning and understanding of LAM.

    NZ LAM Trust Director Bronwyn Gray, Professor Vera Krymskaya, University of Pennsylvania and Dr Jilly Evans, Pharmaria Therapeutics, San Diego.

    More than 100 women with LAM participated to the conference.


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    March 2013 LAM NZ update

    Bronwyn Gray, the NZ LAM Trust's Director met recently in Melbourne with LAM patient, Heather Telford, immediate past president of LARA (LAM Austrlasia Research Alliance) and with Gill Hollings from LAM Action, United Kingdom.

    Dr Jeff Lindenmayer, LAM research scientist at the Peter McCallum Cancer Centre in Melbourne is seen here with his wife Heather and with Gill and Peter Hollings, Lesley Boyles and Bronwyn Gray.

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    March 2013 LAM NZ update

    The University of Auckland honours NZ LAM Trust Research Scientist: Dr Jilly Evans.


    Dr Jilly Evans

    On March 1st, New Zealander, Dr Jilly Evans received the Distinguished Alumni Award at a dinner in her honour at the University of Auckland.

    Dr Evans, who completed her Masters of Science with First Class honours at the University of Auckland, before completing her PhD in Canada, is a world renowned research scientist, who has had involvement in scientific investigation into LAM for the past 14 years.

    Dr Evans, is a scientist and innovator who has led major drug development programmes in Canada and in the United States and the NZ LAM Trust is proud to have such a renowned champion involved with our organisation.

    Following on from more than a 20 year career with the giant Merck Frost, pharmaceutical company, Dr Evans and her colleagues recently founded PharmAria Therapeutics in San Diego where they are developing small molecule drugs to treat cancers and fibrotic diseases.

    A member of the American LAM Foundation Scientific Advisory Board, Dr Evans has a keen interest in global LAM investigation and a personal interest in ongoing NZ LAM research programmes and LAM patient advocacy and support in New Zealand.

    The LAM Trust congratulates Dr Evans on her Distinuished Alumni honour.

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    Tim Weaver of Waiheke Island will participate {in honour of LAM NZ} in the Lake Taupo Cycle Challenge - cyling 160km on November 24th
    > Click here to donate here to support Tim's marathon race, and to raise funds for the LAM Trust's medical research fund

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    November 2012 LAM NZ update

    LAM Trust Director Bronwyn Gray attended the 2nd European LAM Meeting held at the end of September in Barcelona. A number of key clinical and basic research investigators came together for the two day meeting which highlighted research progress made in the two years since the inaugural European LAM meeting, held in 2010 in Udine, Italy.

    LAM patients and family members attended from Spain, Italy, Germany, Holland, Great Britain, Romania, Israel and France.

    See below for details on our upcoming NZ LAM Trust fundraising event...


    Organiser of the Barcelona LAM meeting:
    LAM patient Marie Luz Vila
     
    Professor Vera Krymskaya ( USA ) and Professor Antonio Roman (Spain) Co chairs at the Barcelona LAM meeting

    2012 LAM Fundraising event:

    The NZ LAM Trust end of year fundraiser will be in the form of a house concert titled "Talking about Katherine Mansfield"

    The acclaimed New Zealand actress Cathy Downes will present this one woman show about the life of New Zealand writer Katherine Mansfield, who died of lung disease in 1923.

    Date: November 18th, 2012 -- House Concert in Parnell -- Tickets $35 -- for further details & information email director@lam.org.nz

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    October 2012 - STOP PRESS!

    Announcement of the publication of the collaboration between Professor Merv Merrilees of the University of Auckland and Professor Vera Krymskaya et al of the University of Pennsylvania.

    The LAM Trust is proud to announce publication in the prestigious Science Translational Medicine of the paper titled "Model of Pulmonary Lymphangioleiomyomatosis (LAM): Prevention of Alveolar Destruction and Airspace Enlargement in a Mouse".

    This collaboration and publication of this research heralds new and exciting opportunities for clinical trials in LAM patients!

    > Click here to read this paper

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    The Amazing Cupcake Afternoon Tea LAM fundraiser 2012July 2012 LAM NZ update

    The LAM Trust hosted a sumptuous afternoon tea on June 24th; 100 supporters ate beautiful cupcakes, sandwiches and other afternoon tea delights.

    The Supreme Coffee Company supported the event with their coffee and the Trustees raised $7,000 for the Trust's ongoing research fund.

    The next fundraising event will be at the end of November; details will be announced after the second European LAM Conference which will take place in Barcelona on the 28th and 29th of September.

    The amazing LAM NZ cakeOur LAM scientific collaboration between the University of Auckland and The University of Pennsylvania will see principal LAM investigator, Prof Merv Merrilees from Auckland spending time in Philadelphia later this year.

    Professor Vera Krymskaya and her lab are working with Professor Merrilees on interesting and potentially exciting discoveries; details of background to this work can be viewed here: LAM Webisodes interview with Prof Merrilees (watch the video on our homepage).

    Our three years of work on LAM investigation at the Malaghan Institute of Medical Research in Wellington has recently been completed as funds have run out... we hope that the Malaghan will be successful in its next funding round, so that our work can be continued with Professor Mike Berridge and Dr James Baty. Dr Baty's update and report will be posted on this site as it comes to hand.

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    June 2012 LAM NZ update

    The NZ LAM Trust's fundraiser "The Amazing Cup Cake Afternoon Tea" - June 2012At the recent American Thoracic Society meeting in San Francisco, a number of poster and platform presentations on the advances in LAM scientific research, highlighted the growing focus and importance of the international work on this disease.

    The April 2012 Annual LAM Conference in Cincinnati, Ohio, was the 15th LAM patient, family and medical conference held and was attended by patients from around the world, including first attendances from a Russian patient and her doctor. New Zealand and Australia were also represented by patients and family members.


    Bronwyn Gray: Trust Director at the LAM Awareness and Information Booth, American Thoracic Society meeting in San Francisco in May
     
    Professor Merv Merrilees from the University of Auckland and Professor Vera Krymskaya from the University of Philadelphia planning the next research onslaught against LAM

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    1 June 2012

    WORLDWIDE LAM AWARENESS DAY

    To spread the word and help raise awareness about LAM on Worldwide LAM Awareness Day (June 1), you'll find a link below to the just-released trailer for "Living & Breathing", the first-ever documentary on LAM which follows three prominent women in the LAM cause and their incredible path to overcome the obstacles that comes from living with such a rare lung disease.

    Take a sneak peak at the film below and purchase the DVD today from your local LAM organization (a percentage of the profits will go to the organization to help benefit LAM research).

    For more information, please contact Jim Le at: jimle@frenchcx.com
    Also, become a Facebook fan! Visit our official page at: facebook.com/livingbreathing

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    March/April 2012 LAM update

    LAM Trust Director Bronwyn Gray will attend this year’s LAM Foundation 3-day meeting in Cincinnati, Ohio, USA; all New Zealand GPs, LAM patients, family members and supporters along with clinical and basic science research investigators are warmly invited to attend:

    International Lymphangioleiomyomatosis Research Conference and Patient & Family Educational LAMposium
    FRIDAY 20 APRIL – SUNDAY 22 APRIL 2012
    The Westin Hotel, Cincinnati, Ohio - USA

    IT'S NOT TOO LATE TO REGISTER!

    Physicians, scientists, patients, family and friends are all invited to attend this extraordinary weekend. LAM physicians and scientists will meet to explore new research directions, discuss what has been learned so far, and come to consensus on important issues that affect the lives of women with LAM. LAM patients and their family and friends will meet concurrently to learn about LAM from some of the most knowledgeable and caring physicians and professionals in the field.

    > CLICK HERE TO REGISTER FOR THE CONFERENCE AND TO MAKE YOUR HOTEL RESERVATIONS

    Please be sure to register online as soon as you know you’ll be attending the conference. EVERYONE coming to the conference must register so that we have the correct number of meals and conference materials available. Thank you for helping us with our plans as we anticipate a very successful LAM conference!

    THE DEADLINE TO REGISTER AND TO MAKE HOTEL RESERVATIONS IS MARCH 26TH. This conference is the most stimulating and anticipated event of the year. It provides a unique opportunity for physicians, scientists, LAM patients and their families and friends, to unite the LAM and scientific communities!

    You don’t want to miss this inspiring meeting!

    If you have problems registering, contact Bronwyn Gray (LAM NZ)

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    February 2012 LAM update

    Rare Disease Day 2012INTERNATIONAL RARE DISEASE DAY – 29 February 2012

    Rare Disease Day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients' lives.

    There are about 7000 rare diseases identified. About 80 percent of rare diseases are genetic in origin and it is estimated that about half of all rare diseases affect children. Rare diseases can be chronic, progressive, debilitating, disabling, severe and life-threatening. Information is often scarce and research is usually insufficient.

    People affected face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden and lack of support services for the patient and family. The goals remain for rare disease patients to obtain the highest attainable standard of health and to be provided the resources required to overcome common obstacles in their lives. By highlighting these issues, the New Zealand Organisation for Rare Disorders and The New Zealand LAM Trust join with the USA's Office of Rare Diseases Research and Europe's Rare Disease umbrella group Eurordis to:

    • Raise awareness of rare diseases
    • Strengthen the voice of patients and patient advocacy groups
    • Give hope and information to patients
    • Bring stakeholders closer together
    • Institute policy actions within New Zealand and with other countries
    • Inspire continued growth of the awareness of rare diseases
    • Emphasize rare disease research and the search for new therapeutics
    • Get equality in access to care and treatment.

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    Dec 2011 / Jan 2012 LAM update

    The New Zealand LAM Trust and Southern Moon Productions have great pleasure in bringing to our website the Trust's first series of LAM WEBISODES. These video clips, which include interviews with four LAM patients, a General Practitioner, a Research Scientist and the Trust's Director are designed to enhance information and understanding about LAM.

    > Click here to watch our LAM webisodes (videos)

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    November 2011 LAM update

    The LAM Trust is delighted to announce that we have received funding for the making of 8 video clips, featuring interviews with 4 LAM patients, a GP and a LAM research scientist from the University of Auckland.

    The funding has been granted by Pub Charities and the production of the video clips is underway; when completed, they will be embedded into the LAM Trust website and will be available for viewing. The Trust is very excited about this work which will enhance the website and will offer new and important information to viewers; the Trust wishes to thank Pub Charities for its decision to fund this initiative.

    A FUNDRAISING EVENT FOR THE NEW ZEALAND LAM TRUST
    You are invited to a sale of art Works by well known New Zealand Painter Russell Hollings
    Russell's early and current works (all framed) will be on sale with a generous donation from each work sold being donated to the LAM Trust’s LAM science research fund.

    WHEN: Sunday 27 November from 4-6pm
    WHERE: Russell's Studio – 1 Prosford St, Ponsonby

    > view flyer

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    L to R: Heather Telford (Australia), Mary Dunkle (USA), Domenica Taruscio (Italy), Bronwyn Gray (New Zealand)

    April 2011 LAM update

    Melbourne's Royal Alfred Hospital is expected to soon begin using the new Diagnostic Blood Test in its Emergency Department. For more information please contact either the New Zealand LAM Trust or LARA – LAM Australasia Research Alliance.

    NZ LAM Trust Director Bronwyn Gray will attend the American LAM Foundation Conference in Cincinnati in early April, and will join with Heather Telford, President of LAM Australasia Research Alliance at the Awakening Australia to Rare Diseases Symposium, a three day meeting being held in Freemantle (Western Australia) in mid April.

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    16 March 2011

    Results of the clinical trial known as the "MILES TRIAL" are now available. Click here to read more on our Scientific Research page.

    March 2011 LAM update

    A LAM Science Seminar and presentation by visiting LAM Scientist, Professor Vera Krymskaya, from the University of Pennsylvania to scientists and researchers at the Malaghan Institiute of Medical Research took place in Wellington on March 4th;
    The Seminar coincided with the handing over of a cheque for $40,000 from the New Zealand LAM Trust to Professor Mike Berridge; Research Professor and Group leader of the Malaghan’s Cancer Cell and Molecular Biology team. www.malaghan.org.nz

    The full amount of this funding will be dedicated to the continuation of the Institute’s LAM research programme and was received from the Trust’s major benefactors:

    • The Douglas Charitable Trust and The David Levene Foundation
    • The Trustees thank both the Levene Foundation and the Douglas Trust for their ongoing support of our research programme at the Malaghan and for their generosity and commitment to the investigation into finding a cure for LAM!!!

    click to see menu - LAM Charitable Trust dinner at Dine by Peter GordonAt the end of March the Trust will host a fundraising dinner created and cooked by long time LAM Trust supporter and NZ’s most well known London based chef, Peter Gordon; Peter will create 'A Dinner to Die for' at Sky City's Grand Hotel and the Trust wishes to thank Peter for his time and expertise and most of all, his unflagging support for what we are working so hard to achieve. Very special thanks go to Villa Maria Wines and to Kennedy Point Vineyard on Waiheke Island for their donation of matching wines for the 5 course meal.

    Jeans for Genes Day in February was a somewhat quiet affair as our hearts went out to the people of Christchurch; however donations from staff at a number of businesses and organisations, who supported the Christchurch earthquake appeal, also managed to wear jeans and think genes on the day. Our J for G day new date is planned for April 15.


    LAM Director Bronwyn Gray hands over a $40,000 cheque to Professor Mike Berridge to fund LAM research
     
    Peter Gordon created 'A Dinner to Die for' fundraiser held in March 2011
     
    Dr James Baty with Prof Vera Krymskaya at the Malaghan Institute of Medical Research

     

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    October 2010 LAM update

    European LAM Conference: Udine, Italy | October 1–3, 2010

    The first European hosted LAM Scientific and Patient conference took place in Udine, Italy, earlier this month.

    Clinical experts, basic scientists and LAM patients from Europe, UK, USA, New Zealand and Australia gathered in Udine, a beautiful historic Italian city approximately 130 kms northeast of Venice.

    The three day meeting was hosted by Italy's patient group LAM Italia, with sponsorship and support from Novartis Pharmaceuticals, Chiesi Foundation, GlaxoSmithKlein, the Commune and University of Udine and the Regione Autonoma Friuli Venezia Giulia.

    The meeting began on October 1st and was opened by LAM patient and organiser Dr Iris Bassi, with the Regional Minister of Health, Sr Vladimir Kosic, welcoming scientists, doctors, and patients from twelve countries across Europe, USA, UK and Australasia.

    The New Zealand LAM patient group was represented by the Director of the New Zealand LAM Trust, Bronwyn Gray and was attended by Dr James Baty, LAM investigator from Wellington’s Malaghan Institute’s Cancer cell biology group. Dr Baty is currently completing Year One of a three year LAM research project, examining the self renewal properties of LAM cells.

    The Udine conference was a wonderful opportunity to meet with colleagues from global LAM research teams and to hear presentations of cutting edge LAM science from around the world, while giving patients up to date information and opportunities to speak with the researchers and with other women with LAM.

    Titles of Papers and Presentations included "New Insights into the Pathogenisis of LAM", "New Therapeutic Target Possibilities for LAM" ,"Novel Treatment Strategies, Clinical Behaviour of LAM ", "An Integrated Clinical Approach to LAM", "Clinical and Molecular Insights into LAM","Lung Transplantation for LAM", and "National and International Initiatives to Improve Collaboration on Rare Diseases".

    Presenters at the meeting included:

    Professor Frank McCormack Dr Cheryl Walker
    Dr Lisa Henske Dr Joel Moss
    Professor Vera Krymskaya Dr Simon Johnson
    Dr Amy Farber Assoc Professor Jeanine D’Armiento
    Dr Markus Weckman Professor Franco Bonetti
    Dr Caroline Heckman Dr Sergio Harari
    Dr David Rodman  

    LAM patients or family members attended from Italy, Croatia, Spain, France, Roumania, Austria, Germany, England, USA, The Netherlands, Australia and New Zealand.

    As well as offering the highest level of scientific investigation into this rare and devastating disease, there was an over arching message of hope for the future of the women with LAM who attended the meeting and for those women suffering from LAM around the world.

    It is hoped that a follow on European LAM Conference will take place in Madrid, Spain or in Poitiers France in 2012.


    LAM patients with NZ LAM Director Bronwyn Gray (2nd from left) attended from Italy, New Zealand, Croatia, Australia, Austria, USA, Germany, France, UK and Spain
     
    Bronwyn Gray speaking at the LAM Conference held in Udine, Italy (October 2010)
     
    Prof Vera Krymskaya and Bronwyn Gray at the Italian LAM meeting; night off in old city of Citivale, Italy

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    15 September 2010

    Bronwyn Gray (LAM Trust Founder & Director) is named Winner of the Auckland Region Kiwi Battler competition!.. The LAM Trust received $10,000 from the Morgan Foundation towards finding a cure for LAM.

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    LAM's Bronwyn Gray & Dr James Baty of Malaghan Institute of Medical ResearchSeptember 2010 LAM update

    LAM Director Bronwyn Gray and Dr James Baty will attend the first European LAM Science Conference in Udine Italy being held on October 1st, 2nd and 3rd

    Dr Baty will also visit LAM researchers in Philadelphia and Maryland as part of his LAM research project funded by the NZ and Australian LAM patient organisations.

    > read more about the LAM Research Programme below (July 2010 story)


    August 2010 LAM update
    LAM Trust Director Bronwyn Gray is an Auckland regional finalist in the New Zealand Kiwi Battler competition
    Bronwyn has been battling away for the past 11 years raising awareness and raising funds for research into LAM; see www.kiwibattler.com for more details


    LAM Research Programme: What's happening at Wellington's Malaghan Institiute of Medical Research
    July 2010

    Project:
    Self-Renewal Properties of LAM cells

    Personnel:
    Dr James Baty and Research Professor Mike Berridge

    Primary project aims:

    1. To determine whether LAM cells are capable of growing under conditions that favour the generation of self-renewing cancer stem cell-like cells.
    2. To determine whether LAM cells grown under "cancer stem cell" conditions express increased self-renewal genes compared with cells grown in normal conditions.

    Summary of key achievements to date:

    • LAM cells from the lungs of three patients and non-LAM lung smooth muscle cells from two individuals are now growing in our laboratory. These cells were collected by Prof Judy Black and Dr Lyn Moir (Woolcock Institute of Medical Research, Sydney) from lung transplant patients and delivered to the Malaghan Institute frozen on dry ice. Some of the growing cells have been re-frozen and are being stored in liquid nitrogen for future experiments. All of the cell types tested have shown expression of smooth muscle actin. However, we have had difficulty observing increased staining of the LAM cells with the antibody HMB45. This could be due to the antibody itself, so new antibody has been ordered from a different supplier and these experiments will be repeated
    • We have also recently taken delivery of LAM cells from an additional three patients including cells from lungs cysts, and cells that Dr Moir and Prof Black obtained from chylous fluid from the lungs of a LAM patient. We plan to investigate the stem cell properties of these cells and see if they behave differently from the LAM cells taken from nodules growing in the lungs of patients. (Thanks to LARA for funding the delivery costs).
    • Serum-free cell growth: Results so far have indicated that all the cell types are able to survive in serum-free culture medium ("stem-cell favouring conditions"). There is some evidence of non-adherent "sphere" formation, which is usually indicative of stem cells. However, while spheres/clusters of cells form initially they do not appear to reform after passaging.
    • Expression of self-renewal genes: Our experiments have shown that cells growing in serum-free culture medium increase the expression of some genes involved in cellular self-renewal (Sox2, BMPR2, possibly Oct4 and Msi1). Up-regulation of these genes can be indicative of a population of stem cells. Intriguingly, non-LAM lung cells growing under these conditions also showed increased expression of self-renewal genes. One possibility is that these cells represent a population of cells with self-renewal potential in non-LAM lungs.
    • Hypoxia (low oxygen conditions): LAM and non-LAM cells have been cultured in 1% oxygen to see if they are able to grow under low oxygen conditions. The results so far suggest that they are indeed able to survive and grow however the system needs some refinement to obtain more reliable results.
    • 17- b-estradiol: Experiments investigating the effect of 17- b-estradiol on LAM cell growth over a few days have so far been inconclusive so we will be testing a slightly different experimental approach so determine if 17- b-estradiol is able to stimulate the growth of the LAM cells. All the additional materials required for these experiments have now arrived and so this work will be conducted in the very near future.
    • Estrogen receptor: It has been reported by others that LAM cells have higher expression of the receptor for estrogen, which would explain their response to this hormone. We have investigated the expression of the estrogen receptor subunits a and b in LAM and non-LAM cells. Our experiments have indicated that the expression of the subunit is higher in 2 of 3 LAM cell types when compared to non-LAM smooth muscle cells. We plan to further investigate estrogen receptor expression in the cells by looking at the levels of actual estrogen receptor protein using specific antibodies.

    Finally, we were successful with an application to the Wellington Medical Research Foundation for a grant-in-aid of research for working expenses.


    New research lab looks at rare, incurable disease leaving young women breathless
    22 April 2010, Sydney

    The Woolcock Institute of Medical Research, a leading institute specialising in respiratory and sleep research, officially opened the doors of its new laboratory which will investigate the cellular and molecular causes of chronic airway diseases. A specific focus for 2010 is the Institute’s unique research into LAM (lymphangioleiomyomatosis), a very rare and incurable lung disease, which only affects young women. Bettina Arndt, journalist and Patron of the LAM Australasia Research Alliance (LARA) kindly opened the labs to an audience of over 50 external guests last night.

    LAM is a progressive lung disease caused by a random gene mutation, which affects only women and strikes in the prime of their lives typically during child bearing years. Although prognosis is improving, a sufferer’s lifespan was predicted at 10-15 years from diagnosis and there is currently no cure, with a lung transplant the ultimate treatment.

    Research is integral to understanding the causes of LAM, including why it affects only women, as well as developing treatments and improving patient outcomes. The Cell Biology Group, which now opens a new laboratory at the Institute, is currently conducting specific cell research into LAM.

    The Cell Biology Group with support from the CRC for Asthma and Airways made an important discovery in 2008, which involved identifying and cloning a molecule (now called ‘lamstatin’) which is present in healthy, but not LAM lungs. This molecule stops the growth of LAM cells and the overgrowth of lymph vessels. Studying the way in which lamstatin works helps the researchers understand how to halt the progression of the disease.

    This discovery has brought the team closer to their goal of understanding where LAM cells originate and how they divide and migrate. The group hopes to discover a solution by investigating the similarities LAM has to other diseases.

    Research Leader, Professor Judy Black says "We are a very passionate team of researchers. Patients with LAM who are undergoing lung transplantation are very keen to "donate" their diseased lungs to us. The availability of such precious tissue opens up rare research possibilities. Just last month when a LAM lung arrived in the lab, the whole group immediately diverted their attention to it."

    LAM is a rare disease, affecting one to three women in a million. "There are currently around 70 sufferers in Australia," says Professor Black. "Most women and even some health care professionals, are unaware of LAM’s existence and symptoms and we suspect that the disease is under-diagnosed as a result."

    Professor Black says, "Women with LAM (which may soon be classified as a cancer) may experience varying degrees of breathlessness. Some women are short of breath only on exertion, while others are breathless even at rest. This symptom is common to other conditions, like asthma and can therefore be overlooked."

    It is estimated that around 250,000 women worldwide are affected . LAM causes the lung capacity of the sufferer to progressively decline, resulting in the need for oxygen therapy. It is characterised by an unusual type of smooth muscle cell that grows uncontrollably and invades the tissues of the lungs, including the airways, and blood and lymph vessels. The accumulation of LAM cells forms nodules and cysts, which destroy healthy tissue. Over time, LAM cells create holes in the lungs, preventing the lungs from providing oxygen to the rest of the body and making breathing a daily battle. Symptoms of LAM include varying degrees of breathlessness, collapsed lung, chest pain, cough, or fatigue. Further information can be found at the LAM Australasia Research Alliance (LARA) website, www.lara.org.au


    Interim Report on the world's first Double Blind Clinical Trial using the drug Sirolimus (Rapamycin)
    presented to LAM patients at the April 2010 LAM Conference held in Cincinnati USA

    19 April 2010

    MlLES Trial Interim Results The Data Safety Monitoring Board (DSMB) recently completed their review of an early interim analysis of study data for the MlLES Trial. The review included study data from the first forty MlLES Trial participants who have completed their first year in the study.

    The DSMB recommends that the MlLES Trial continue through August, 2010 until all actively-enrolled study participants have completed their 12-month study visit. During this time, the MlLES study staff and participants will remain "blinded" to their treatment group (that is, they will not know who is on placebo and who is on sirolimus).

    After August, 2010, the final analysis will be conducted. At that time more information will be available regarding the effectiveness and safety of sirolimus in treating LAM. All study staff and participants will then be "unblinded" to individual participant treatment assignments.

    FAQs

    What is an interim analysis and why was it conducted at this point?
    An interim analysis is an early look at the data collected from study participants and is done before the study is completed. The study statistician and the DSMB look at the data together for safety and treatment results. For MILES, the DSMB recommended an interim analysis so that LAM patients might have a shorter time to wait for an answer about the study results.

    What does the DSMB review mean to me as a study participant?
    It means that all aspects of the study have been examined by a group of scientists and physicians who are experts in clinical trials and or LAM. Unlike the study investigators, they know who is on the study drug and who is not. They look at the data and determine if it is already clear that sirolimus is effective or ineffective, and if it is productive and safe for you to continue participating in the study. The DSMB concluded that not enough information is available at this halfway point to make a decision about whether sirolimus is an effective treatment for LAM and that the trial should continue as originally planned. This is a very common DSMB recommendation at the interim point.

    Does my participation make a difference in the MILES Trial at this point?
    The data that will be collected from now through August will be very important in deciding if sirolimus is an effective and safe treatment for LAM. Not enough is known at this point to decide this key study question.

    When will I find out what I have been taking on the study?
    You will find out what your treatment has been after the final analysis has been completed. We anticipate that this will be in late 2010 or early 2011 when all of the data has been analyzed.


    April 2010 LAM update

    Bronwyn Gray will be attending 'LAMposium 2010 – International LAM Research Conference'. Bronwyn will represent both the New Zealand and Australian LAM Patient Organisations.

    > Click here for details on the conference


    February 2010 LAM update

    The New Zealand LAM Trust joins the New Zealand Organisation for Rare Disorders and many other support groups around the country and around the world in acknowledging International Rare Disease Day.

    February 28th is International Rare Diseases Day, a new event on the calendar, drawing in groups from New Zealand and around the world as they work to improve information and support for patients and families affected by rare diseases, to improve health care, and boost research into treatments for them.

    International Rare Diseases Day began just a few years ago in Europe, on 29 February 2008 (well of course, it’s the rarest day in the calendar). Originally intended to be celebrated just in leap years, momentum and enthusiasm have grown so it is now an annual event.

    The NZ Organisation for Rare Disorders is an umbrella network that provides information for patients and families, a directory of support groups, and promotes rare disease issues with health professionals and officials. It was set up in 2000 and has made progress on a number of fronts by working in networks with many other groups on issues including expansion of newborn screening, improvements to genetic services, improvements to medicine funding, and provision of websites to small support groups.


    January 2010 LAM update

    The Director and Trustees of the New Zealand LAM Trust, were saddened by the sudden death in Auckland on January 11th of Professor Peter Black. Professor Black was a great researcher with a passionate interest in airways disease and pharmacology. He had shown an ongoing interest in LAM investigation and his research work was highly regarded both locally and internationally; Professor Black's sudden and very premature death has saddened the medical and research community and our condolences go out to his family.

    Two International LAM conferences will be held in the USA during the first half of this year; The American LAM Foundation Conference 2010 will be held in Cincinnati, April 7th -9th and the LAM Treatment Alliance will host a LAM booth at the American Thoracic Society's annual meeting which will be held in mid May in New Orleans.

    The LAM Trust's Director will attend both meetings as part of the organisation's continuing commitment to taking an integral part in the global network of LAM research and patient support.

    November 2009 saw the 10th anniversary of the establishment of New Zealand LAM Trust; we look towards the next months and years with hope, in the knowledge that the past decade has been one of extraordinary scientific progress in this rare and cruel disease. We take this opportunity of, again, thanking family and friends, colleagues, and our research teams, here in New Zealand and around the world for their work and support.


    LAM Research
    November 2009
    A contract has been signed and work begins this month at the Malaghan Institute for Medical Research in Wellington. The Agreement to fund a one year pilot programme of new LAM Research is between the Malaghan Institute's Cancer Cell and Molecular Biology Group and The New Zealand LAM Trust in collaboration with LAM Australasia Research Alliance (LARA).
    > read full story


    New hope for sufferers of rare lung disease
    10 November 2009
    Lymphangioleiomyomatosis or LAM, is a rare but devastating lung disease that most commonly affects women between the ages of 20 and 40. There is currently no cure for LAM, but a new research initiative at the Malaghan Institute of Medical Research, Wellington, funded by the NZ LAM Trust and the LAM Australasia Research Alliance, offers the promise of more effective treatment options for sufferers of this complex disease.
    > read full story


    Acapella has helped a woman with LAM who developed bronchitis
    October 2009
    A woman with LAM developed bronchitis. She was having trouble breathing because she had so much mucus in her airways. No amount of coughing would clear the mucus and she was becoming very tired. Physiotherapist Dinah Morrison, from Breathing Works, the NZ clinic specialising in breathing conditions, recommended that the patient try a new device called Acapella. Easy to use, Acapella provided immediate relief.
    > read full story


    July 2009 LAM update

    Building on networks made at 2007 and 2008 LAM Symposia hosted by the Boston based LAM Treatment Alliance, New Zealand LAM Trust Director Bronwyn Gray attended the May 2009 American Thoracic Society ( ATS) meeting held in San Diego. The LAM Treatment Alliance hosted an information booth during the ATS meeting and the New Zealand organisation took this opportunity to work in the Booth and to build further global LAM research connections.

    The Trust was represented at last month's "High Cost, Highly Specialised Medicines Forum:" held in Wellington; this meeting was a follow up from a two day Forum held in November 2008. As with many rare diseases, where global research and scientific collaboration is moving ever forward towards trialling potential drug therapies, funding and access within New Zealand to new, high cost, highly specialised medicines, is of vital importance. The LAM Trust recognises the need to be at the forefront of the politics of access to the latest therapies and is working on behalf of LAM patients to ensure this.

    Continuing efforts to raise funds to support New Zealand's role in playing its part in Global LAM investigation, were helped by the donation in June of $2,000 from Chef and LAM Trust supporter Peter Gordon; Peter's appearance fee for a television commercial showcasing " The Heart of the City" was directed to the Trust's website. Donations to the Trust are sought on a continuing basis and can be made via this website; tax incentives for charitable giving were highlighted in a recent NZ Herald article, confirming that from April this year, donors can now claim back from the Tax Department 33% of whatever they give to Charities.


    October 2008 LAM update

    LAM Trust Director, Bronwyn Gray attended the September '08 LAM Treatment Summit held at the University of Sussex, Brighton UK and hosted by the LAM Treatment Alliance. The meeting paid respects to the late Michelle Gonsalves, founding President of FLAM - the French LAM patient organisation who died in Tours, France on August 31st. Michelle was a leading light in LAM Matters in Europe and internationally and she will be sorely missed by patients, clinicians and researchers.

    Among the important issues raised during the two day summit was the critical matter of the collection of biopsied LAM tissue and other LAM patient material for use in research; The Summit was addressed by Jeffrey Thomas - Director of Donor Services at the Philadelphia based NDRI - the National Disease Research Interchange. The NDRI's work in rare disease tissue procurement and distribution to research labs is well established in the USA and in Europe. A meeting of the members of the LAM Australasia Research Alliance's ( LARA ) Scientific and Medical Advisory Board and Mr Thomas is planned for November in Sydney.

    A Centre of Excellence in LAM Studies has beeen established at Harvard University and the Brigham and Womens Hospital in Cambridge, Boston USA. The centre is to be directed by Dr Lisa Henske who has worked in LAM research for the past 12 years and who has presented at LAM Symposia in both Auckland and in Sydney. Dr Henske discovered the importance of the tuberous sclerosis genes and the connection to LAM in 2000.

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    ICORD 2008 Conference
    May 2008

    LAM Trust Director and Member of the Board of the New Zealand Organisation for Rare Disorders, Bronwyn Gray will attend the 4th International Conference on Rare Diseases and Orphan Drugs ( ICORD) being held in Washington ; May 22-24th.

    ICORD 2008 is dedicated to continue to develop constructive international collaboration resulting in true advantages for patients with rare disorders. The meeting also celebrates the 25th birthday of the American National Rare Disease Organisation NORD.

    The ICORD meeting follows on from Bronwyn Gray's attendance at the annual LAM Foundation of America's Conference in April in Cincinnati and her attendance at the World Wide LAM Patient Coalition held alongside the main LAM science and family conference in April. There are now 16 member nations of the worldwide LAM patient coalition and each year this number grows as more patient organisations join the fight to find a cure for LAM.

    For more information see www.rarediseases.org or www.icord.info

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    THE NEW ZEALAND LAM TRUST --- A RARE DISEASE ORGANISATION
    March 2008

    The LAM Trust takes an active part in working alongside an ever increasing number of rare disease organisations in this country and around the world to improve the welfare of people with rare diseases and to offer patients and their families better knowledge, scientific research and education and awareness.

    In March 2008, the Executive Director of the New Zealand Organisation for Rare Disorders, John Forman and NZORD Board member, Linda Clarke met with Health Minister, David Cunliffe to seek the Minister's consideration on the promotion and need for centralised responsibity and government recognition and policy in dealing with rare disorders. It has been a long term priority for NZORD and for the large numbers of family and support groups affiliated to the national group,to change the history of neglect for rare diseases, clinical care information and treatment issues for those approximately 8% of New Zealanders suffering from a rare disease.

    The full briefing and request to the Minister is available on the website www.nzord.org.nz; but the three main issues covered in the Briefing were:

    1. that the Government recognises rare diseases as a significant public health issue with a suitable policy response
    2. that the Government appoints an individual or group with responsibility and authority to coordinate policy relating to rare diseases
    3. that the Government implement the Molecular Genetic Testing Report (Oct 2003) as a first priority item.

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    Global LAM Patient Summit 2008
    January 2008

    LAM TREATMENT ALLIANCE GLOBAL LAM PATIENT SUMMIT
    11-13 January 2008
    Oxford, United Kingdom
    SUMMIT REPORT

    Fifty seven researchers,clinicians, patients and patient family members representing seventeen countries met in Oxford UK in January.

    Bronwyn Gray represented both NZ and Australian LAM patients and their families in her capacity as Vice President of LARA (LAM Australasia Research Alliance) and as Director of the New Zealand LAM Trust.

    The aim of the Summit, which was a follow on from the meeting hosted by the LAM Treatment Alliance in Stockholm February 2007, was to involve patients in progress towards finding a treatment for LAM. Discussion re collaboration and coordinated efforts to make the fastest possible progress in the quest for a treatment for LAM dominated the meeting.

    There was much discussion on establishing ways in which patients can support and facilitate research. It was agreed that the most limiting factor for research is not lack of interest from researchers or lack of money --- but access to LAM tissue and LAM patient data.

    Scientists are often deterred by the small number of patients in any given country and this may be even more so in Australia and New Zealand --- given our relatively small populations.

    The meeting was addressed by representatives from the American based National Disease Research Interchange (NDRI); NDRI has a very strong track record and commitment in the field of tissue procurement and distribution, and has been coordinating fresh and fixed LAM tissue in the USA for the past year.

    It was decided that NDRI would extend its service and manage the procurement of LAM tissue within Europe; thus creating and widening an efficient global research network.

    There was discussion on ways in which countries in the Australasia/Asia Pacific region could set up an efficient, coordinated and managed network for the procurement and distribution to researchers of fresh LAM tissue; NDRI has agreed to investigate options for assisting in our region and working to provide a solution. NDRI's website can be viewed at www.ndriresource.org.

    Further discussion involved clinical trials and off-label drug use involving drugs which included sirolimus ( rapamycin); Dr Ulrich Costabel ( Germany) emphasised the importance of clinical trials and of having sufficient patient numbers to give statistically significant results, however, clinicians at the meeting acknowledged that fast declining patients do not have the luxury of time and may not be able to wait for trials.

    Information on the designing of a Global LAM database --- LAMSight by MIT ( Massachusetts Institute of Technology) was presented at the meeting. This database would give the opportunity for LAM patients around the world to register their details; this is important so that researchers can learn how many patients exist in each country and access other general information about them. This will help in the design of clinical trials and will also enable researchers and other patients ( with permission) to make contact with news about developments in research and clinical trials. All data will be extremely well protected from unauthorised access as patient privacy is a high priority in the database design.

    The meeting was extremely valuable and it is hoped that LARA and the NZ LAM Trust continue to work together with basic scientists and LAM investigators in both our countries as well as furthering the connections made at the APSR meeting in Brisbane in November 2007.

    Participants:

    > S. Ben Hur – Patient. Accompanied by Husband Guy Fesherman, Israel
    > Cezar Caluschi – Patient Family, Romania
    > Havi Carel PhD – Patient. Accompanied by Husband Samir Okasha, LTA Summit Organizing Committee Bristol, United Kingdom
    > Alissa Caron – LAM Treatment Alliance Volunteer. Oxford University - Public Health Department Oxford, England
    > Álvaro Casanova Espinosa, MD – Clinician-Researcher. Hospital Universitario, La Princesa Madrid, Spain
    > Ulrich Costabel MD FCCP – Ruhrlandklinik Germany
    > Vincent Cottin MD PhD – Clinician-Researcher. Hopital Louis Pradel, Reference Center for Orphan Lung Diseases Lyon, France
    > Sheila Curristin PhD – Researcher. National Disease Resource Interchange (NDRI) Philadelphia, PA USA
    > Stephanie Dreyer – Patient. Austin, Texas USA
    > Corine Durand – Patient. Poitiers, France
    > Jim Egan MD – Clinician-Researcher. Mater Hospital Dublin, Ireland
    > Patricia Elliott – Patient. Accompanied by Husband Richard Elliott, Sandyfurd Co. Dublin, Ireland
    > Richard Elliott – Patient Family. Husband of Patricia Elliott, Sandyford Co. Dublin, Ireland
    > Reina Endo – Patient. Hayama, Japan
    > Ian Eslick – Researcher. MIT Media Lab, Cambridge, MA USA
    > Lucy Falconer – Patient. Aylesbury, United Kingdom
    > Amy Farber PhD – Patient. Accompanied by Husband Michael Nurok. LTA Summit Organizing Committee Cambridge, MA, USA
    > Maryam Fathi – Clinician-Researcher. Karolinksa University Hospital Stockholm, Sweden
    > Guy Fesherman –Patient Family. Accompanying Wife S. Ben Hur Israel
    > Michelle Gonsalves – Patient. Tours, France
    > Prof. Alfredo Gorio – Clinician-Researcher. University of Milano; IRCCS Humanitas General Hospital, Rozzano, Milan Milan, Italy
    > Bronwyn Gray – Patient Family. Auckland, New Zealand
    > Sergio Harari MD – Clinician-Researcher Ospedale San Giuseppe Milan, Italy
    > Caroline Heckman PhD – Researcher. University of Helsinki, Finland
    > Tuija Helander – Patient. Accompanied by Husband Teijo Hietanen Eura, Finland
    > Simon Johnson MD – Clinician-Researcher. University of Nottingham Nottingham, UK
    > Jan Johnson – Patient. Organization Representative UK LAM database manager UK LAM Action coordinator UK
    > Krista Kenner – Patient Family. Seattle, Washington USA
    > Jacques Lacronique MD – Clinician-Researcher. Cochin Hospital, France
    > Gonzalo Lainez Gutierrez – Patient Family. Husband of N. Navarro, LTA Oxford Summit Organizing Committee La Rioja, Spain
    > Romain Lazor MD – Clinician-Researcher. Reference Center for Orphan Lung Diseases in Lyon, France, and Bern University Hospital, Switzerland Bern, Switzerland
    > Sherry Marts PhD – Researcher-Facilitator. Society for Women’s Health Research Washington, DC
    > Sara Melloni – Patient. Accompanied by Partner Sebastiano D’Avanzo London, United Kingdom
    > Eleonora Miano – Patient. Catania, Italy
    > Joel Moss MD PhD – Clinician-Researcher. National Heart, Lung, and Blood Institute (NHLBI) USA
    > Anke Müller – Patient. LTA Oxford Summit Organizing Committee, Germany
    > N. Navarro – Patient. Accompanied by Husband Gonzalo Lainez Gutierrez LTA Summit Organizing Committee La Rioja, Spain
    > Tommaso Nicolosi MD – Clinician-Researcher. Cannizzaro Emergency Hospital Catania, Italy
    > Caroline Nilsson – LTA Intern Medical Student. Karolinska Institutet Stockholm Sweden
    > Michael Nurok MD PhD – Clinician-Researcher, Patient Family. Husband of Amy Farber Harvard Medical School Brigham and Women’s Hospital Cambridge, MA USA
    > Berit Oberg – Patient Family. Stockholm, Sweden
    > Samir Okasha – Patient Family. Married to Havi Carel Bristol, United Kingdom
    > Maria Luz Vila Otero – Patient. Vigo, Spain
    > Viera Reptova – Patient. Vienna, Austria
    > David Rodman MD – Clinician-Researcher. Novartis Institute for Biomedical Research Cambridge, MA USA
    > Meredith Scott – LTA Staff. Cambridge, MA USA
    > Flavia Patitucci Sobroza – Patient. Accompanied by Mother Solange Patitucci Sobroza Belo-Horizonte-Minas Gerais, Brazil
    > Solange Patitucci Sobroza – Patient Family. Mother of Flavia Patitucci Sobroza Belo-Horizonte-Minas Gerais, Brazil
    > Susanne – Patient. Germany
    > Anne Tattersfield MD – Clinician-Researcher. Thurgarton, United Kingdom
    > Jeff Thomas – Researcher. National Disease Resource Interchange (NDRI) Philadelphia, PA USA
    > Henrik Watz MD – Clinician-Researcher. Pulmonary Research Institute at Hospital Grosshansdorf Germany
    > Vicky Whittemore PhD – Clinician-Researcher. Tuberous Sclerosis Alliance Silver Spring, MD USA
    > Kai-Feng Xu MD PhD – Clinician-Researcher. Peking Union Medical College Peking, China

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    "Fund A Cure" Campaign
    November 2007

    A letter writing campaign to specifically raise funds for the current scientific collaboration in New Zealand, Australia and USA is underway. Supporters of the work of The LAM Trust are invited and encouraged to donate directly to the Trust to help with this crucial initiative.

    > click here for details on how you can donate


    2007 LAM Conference
    April 2007

    The 11th International LAM Science Conference was hosted by the American LAM Foundation in Cincinnati, Ohio 20-23 April. Six delegates from New Zealand and Australia attended and Professor Merrilees from the University of Auckland presented his latest findings.

    NZ LAM Trust Director, Bronwyn Gray attended the Conference and the Trust is grateful to the continuing support of Merck Sharp & Dohme NZ Ltd who funded Bronwyn's travel to the Cincinnati conference.

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    LAM Joins LARA
    March 2007

    The NZ LAM Trust is delighted to announce that we have recently joined the newly created Australasian LAM organisation: LARA - LAM Australasia Research Alliance.

    The Patron of LARA is well known Sydney social commentator, Bettina Arndt.

    LARA's President is Heather Telford (Melbourne) and Vice President is Bronwyn Gray (Auckland)

    Both New Zealand and Australian LAM organisations are committed to the continuing suport of LAM patients in each of our countries. We are fully committed to working in the wider community to raise awareness about LAM and to continue to raise funds to support ongoing scientific research into the causes and hopefully a cure for this disease.

    LARA's Scientific and Medical Advisory group is made up of clinical and basic science experts from each of our countries.

    Work is underway for the setting up of the first Australasian drug trial for LAM patients.

    Dr Debbie Yates at St Vincents Hospital in Sydney is the Principal Investigator for this first ever clinical trial and LARA is committed to supporting this exciting work.

    Members of LARA's Advisory Group are:

    • Professor Innes Asher (Auckland)
    • Professor Judith Black (Sydney)
    • Dr Christine Forster (Auckland)
    • Assoc Professor Allan Glanville (Sydney)
    • Assoc Professor John Kolbe (Auckland)
    • Dr Jeff Lindenmayer (Melbourne)
    • Dr John McLachlan (Hamilton)
    • Assoc Professor Mervyn Merrilees (Auckland)
    • Dr Abe Rubinfeld (Melbourne)
    • Professor Greg Snell (Melbourne)
    • Dr Helen Whitford (Melbourne)
    • Dr Margaret Wilsher (Auckland)
    • Dr Deborah Yates (Sydney)

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    International collaboration

    The NZ LAM Trust and the LAM Australasia Research Alliance are jointly funding a six month programme of LAM research which will see Dr Lyn Moir of the University of Sydney working with senior LAM investigator, Dr Vera Krymskaya (right) of the University of Pennsylvania in the USA.

    Dr Krymskaya was a keynote speaker at the LAM Symposium which was held in the Blue Mountains in Sydney in May of 2006; She visited New Zealand twice in 2006 and has presented her work on LAM at the University of Auckland and at the Medical Sciences Congress in Queenstown.


    Worldwide LAM Patient Coalition

    In January 2007, The LAM Foundation formed the Worldwide LAM Patient Coalition (WLPC) to collaborate with patient organizations in Canada, Germany, France, England, New Zealand, Spain, Austria, Japan, China, Australia, Brazil, and Italy. Patient leaders within the WLPC have been named LAMbassadors!

    In April 2007, representatives from ten different countries assembled in Cincinnati to participate in the inaugural meeting of the Worldwide LAM Patient Coalition. It was an extraordinary event and a great opportunity for everyone!

    The LAM Foundation believes there are many ways to collaborate with other countries that have assembled and organized LAM patients into a cohesive group. Plans are underway to translate the LAM Patient Handbook into the language of each country represented in the WLPC, initiate a worldwide Advocacy Program, develop a WLPC website, create a LAM PSA in different languages, exchange fundraising ideas, and share newsletter articles, providing support for women around the globe.

    The WLPC will be an excellent avenue to increase numbers for clinical research projects and aid in recruitment for clinical trials. The LAM Foundation is excited about this partnership that will ultimately advance LAM science. We are convinced that we can greatly impact the lives of women with LAM through the WLPC and bring hope to LAM patients worldwide!

    We are proud of our LAMbassadors!

    LAM Australasia Research Alliance (LARA), Australia
    Heather Telford, LAMbassador
    Allan Glanville, MD, FRACP, Medical Advisor

    Associação LAM do Brasil, Brazil
    Flavia Sobroza, LAMbassador
    Carlos Carvalho, MD, PhD, Medical Advisor

    LAM Canada, Canada
    Marsha Cohen, MD, FRCPC, LAMbassador
    John Thenganatt, MD, Medical Advisor

    LAM China
    Lily Wong, LAMbassador
    Kai-Feng Xu, MD, Medical Advisor

    LAM Action, England
    Clare Lauwerys, LAMbassador
    Simon Johnson, MD, Medical Advisor

    Association FLAM, France
    Michelle Gonsalves, LAMbassador
    Vincent Cottin, MD, Medical Advisor

    LAM Selbsthilfe Deutschland, Germany
    Susanne Geiling, LAMbassador
    Hubert Wirtz, MD, Medical Advisor

    Italy
    LAMbassador, TBA
    Sergio Harari, MD, Medical Advisor

    J-LAM, Japan
    Reina Endo, LAMbassador
    Yoshikazu Inoue, MD, Medical Advisor

    New Zealand LAM Charitable Trust, New Zealand
    Bronwyn Gray, LAMbassador
    John Kolbe, MD, Medical Advisor

    AELAM, Spain
    Mari Luz Vila, LAMbassador
    Antonio Roman, MD, Medical Advisor

    The LAM Foundation, United States
    Susan Milligan, LAMbassador
    Frank McCormack, MD, Medical Advisor

    Bronwyn Gray, LAMbassador, New Zealand LAM Trust - New Zealand

    After my daughter Lisa's shock diagnosis of LAM in 1997, I spent a year finding information about LAM; I traveled to Europe and to the United Kingdom and I made contact with Sue Byrnes in the USA. I met in 1998 with Professor Anne Tattersfield and Dr Simon Johnson in Nottingham UK. My connection with Sue Byrnes galvanised me into setting up a small LAM organisation in New Zealand.

    In 1998 my daughter met one other LAM patient who tragically died after the meeting and I established the New Zealand LAM Trust at the end of that year, on similar principles to those of the American Organisation. The guidance and support from Sue Byrnes during this time was exceptional and inspiring.

    The New Zealand LAM Trust is a registered Charitable Entity with 10 Trustees and a Medical and Scientific Advisory Board. Our Patron is the Prime Minister of New Zealand, the Honorable Helen Clark. I work full time from my home as the Director of the NZ LAM Trust; the Trust has been in existence now for nine years. We all work on a voluntary basis.

    The New Zealand LAM Trust has organised and hosted the first international two-day LAM science symposium in 2002, and other in 2004, and a third one in 2006. It was crystal clear that these small meetings hosted at the bottom of the world, and the ongoing and critical discoveries in LAM science that had come out of the USA and other countries since 2000, were all part of an exciting worldwide collaborative thrust working towards discovering the crucial answers to the puzzle of LAM.

    Currently, The NZ LAM Trust is co/funding a collaboration between the Universities of Auckland, Sydney, and Pennsylvania with work involving a 6-month post doc student working in Dr. Vera Krymskaya's lab. LAM investigation is also continuing at the Universities of Seattle and Auckland, as part of the work of our principal researcher, Professor Merv Merrilees. Currently the NZ LAM Trust has a database of 12 LAM patients. We are part of the Australia/ New Zealand clinical trial to test doxycycline, beginning at St Vincents Hospital, Sydney, later this year.

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    LAM Awareness
    June 2006

    The ASB Trust funded programme of LAM Awareness aimed at General Practitoners in the Auckland region is underway.

    The June issue of Pro Care's magazine "ProGRAM" has an article about the awareness programme and information packs are being be distributed to GP's in the Auckland region over the next 6 months.

    The LAM Trust is grateful to the ASB Trust for their decision to fund this important education initiative.

    New figures from the American LAM Foundation now suggest that the worldwide incidence of LAM is approx 4-5 women per million population - currently in New Zealand there are 13 women registered with the LAM Trust and in Australia new figures put the number of women registerd with LAM Australia at 50.

    The increased numbers per head of population in Australasia are likely to be as a result of ongoing awareness programmes in each of our countries.


    2006 Virginia Northwood Memorial LAM Science Symposium
    Fairmont Resort, Blue Mountains, Australia

    Symposium Report by Jen Shieff - Trustee, NZ LAM Trust

    The 2006 Virginia Northwood Memorial LAM Science Symposium was hosted by the Australia and New Zealand LAM Trusts and held at the Fairmont Resort in the Blue Mountains west of Sydney. This was the third Symposium and the first to be held in Australia. Previously the meetings were in Auckland - first on Waiheke Island and then at Hotel du Vin south of Auckland.


    Dr Jilly Evans fromSan Diego dicsussing LAM issues with Professor Frank McCormack and Dr David Franz from Cincinnati University Hospital
     
    Dr Andrew Csillag of Sydney and Professor Merv Merrilees , University of Auckland

    There were some basic facts about LAM that I was already very familiar with before I went to the Blue Mountains:

    • Lymphangioleiomyomatosis (LAM) is a rare lung disease that affects almost exclusively women. It was first described in the medical literature by von Stossel in 1937. The disease is characterised by an unusual type of muscle cell that invades the tissue of the lungs, including the airways, and blood and lymph vessels. Over time, these muscle cells form into bundles and grow into the walls of the airways, and blood and lymph vessels, causing them to become obstructed
    • Although these cells are not considered cancerous, they grow without the usual controls within the lungs. Over time, the muscle cells block the flow of air, blood, and lymph vessels to and from the lungs, preventing the lungs from providing oxygen to the rest of the body
    • An unusual, frequently asymptomatic, kidney tumour called an angiomyolipoma (AML) is found in up to 60% of patients with LAM
    • About 2.5% of patients with Tuberous Sclerosis, a genetic disorder, develop a lung disease that is identical to that which occurs in LAM. These patients often have AMLs of the kidneys as well
    • Although patients with LAM do not develop the central nervous system and skin changes of Tuberous Sclerosis, the similarities in the lung and kidney manifestations of the two diseases have led some investigators to postulate that they may have common causes

    Although I had heard many of the speakers previously, they all had sparkling new material to present. There are LAM-related discoveries every few months that change the ways in which scientists think about LAM. All the speakers filled me with hope that progress is being made rapidly and that a cure will be found for LAM.

    I am always grateful to the speakers for their efforts to make their work intelligible to lay people like me, and it is a great privilege to sit, feeling almost like an equal, with eminent scientists and researchers, hearing them speak and being there while they pose questions to each other, challenging each other to do more and more thinking about LAM. And they do it in an atmosphere of trust and calm enquiry, leaving their egos outside the door.


    Professor Vera Krymskaya from the University of Pennsylvania, giving a keynote address to the meeting
     
    At the end of the 2 day meeting - Dr Krymskaya (USA), Professor Black (Aust), Dr Blanca Camoretti-Mercado (USA)
     
    LAM Trust Director Bronwyn Gray talking with Dr John Kolbe, Head of Respiratory Services, Auckland Ciy Hospital
     
    Professor Merv Merrilees, Principal LAM researcher, University of Auckland addressing the meeting with his latest findings

    I won't name all the speakers, but I will put their ideas together in a summary as well as I can. Professor Frank McCormack from the University of Cincinnati opened proceedings after dinner on the first night with a history and update on LAM research. From him and Professor David Franz (also from the University of Cincinnati) from Sarah Boustany (University of Sydney), and from Dr Merv Merrilees (University of Auckland) and Dr Vera Krymskaya (University of Pennsylvania) I have gained my updated LAM understandings and vocabulary. It never ceases to amaze me how my unscientific mind has been opened to a huge range of issues in science which seem clear to me because of the LAM context and because of the clarity of the speakers.

    This year I learned a bit more about cellular and molecular remodelling in LAM as compared with asthma, and in particular the increase in smooth muscle transforming growth factors in LAM. I learned about a kind of support network (my term) for bad behaviour amongst uneducated cells - cells which exhibit the enhanced growth, proliferation, motility and invasiveness typical of LAM. The support comes from several delinquents - from an absent protein called Tuberin, also known as tumour suppressor TSC2 (Tuberous Sclerosis Complex 2), which when present is known to shrink cancer tumours; from Actin-negative tissue which is abnormally proliferated and is even more of a problem than smooth muscle cell proliferation; from hyper-active Versican, a space occupying matrix Proteoglycan which promotes the breakdown of Elastin; from absent Tumstatin, a cleavage fragment of Collagen IV, which functions as a tumour suppressor; and from suppressors of the molecular switch RAC, leading to the activation of another switch RHO and hence to an abundance of stress fibres.

    I also learned that TSC2 is mutated in LAM and fails to suppress the activity of protein S6 Kinase (S6K1) which leads to constant protein synthesis and abnormal LAM tumour cell growth. LAM cells destroy normal lung interstitia and until recently, only a lung transplant could prolong a LAM patient's life.


    Dr Jilly Evans from San Diego addressing the meeting
     
    Lesley Boyles, Auckland, Professor Innes Asher, University of Auckalnd, Jan Barrett, LAM Trustee, Auckland

    Dr Vera Krymskaya reported on her finding that that TSC2 negatively regulates S6K1. She identified S6K1 as a molecular target to treat LAM and found that an FDA approved antibiotic drug called Rapamycin (Sirolimus) specifically and directly inhibits S6K1 and therefore is a drug that can be used to treat LAM.

    There was discussion of Rapamycin, which is about to be trialled in the Multicenter International LAM Efficacy of Sirolimus Trial.

    The scientific evidence on which the trial is based is, as Professor Frank McCormack has stated for the US LAM Foundation website:

    • Dr Elizabeth Henske found that LAM is caused by a loss of the protein Tuberin
    • Fruit fly biologists, Drs Ito and Rubin, found that Tuberin controls cell size and growth
    • Dr Vera Krymskaya found that Tuberin plays very similar roles in LAM cells as it does in fly cells, and that Rapamycin can mimic the function of Tuberin in LAM cells
    • Drs Yeung and Kwiatkowski have found that Rapamycin can shrink tumors in Tuberous Sclerosis animal models
    • Rapamycin is known to inhibit the proliferation of smooth muscle cells that contribute to recurrent blockage of coronary arteries after stent placement
    • Rapamycin for Tuberous Sclerosis and LAM is an elegant example of molecular therapy targeted at the precise cellular defect that causes disease.

    International multicentre clinical trials using Rapamycin are already going on in the USA, UK, Canada and Germany. Professors McCormack and Franz have found that treating LAM with Rapamycin has had promising results.

    At the Symposium I sat beside a woman in her late 50s who had been diagnosed only recently, despite a five year history of AMLs. She listened quietly, rather stunned, as we heard from two other women with LAM, both diagnosed several years ago. Everyone present was deeply saddened by many of their experiences. One had been abandoned by her partner and was fearful about the reaction of her employer to her illness, the other had been fearful that her new partner would leave her when he heard about LAM. These stories demonstrated the typical LAM diagnosis pattern of protracted process and disbelief, of wanting to carry on regardless because there appeared to be so few symptoms. Both had felt singled out.

    The Symposium ended on a very upbeat, enthusiastic note, with fresh hope being given by pharmaceutical research scientist, Dr Jilly Evans. Always inspired and inspiring, this time she seemed even more brilliant than usual. She talked of chance favouring the prepared mind and described how she took a giant leap into the abyss of chance to find a female hormone, Prolactin, that could just possibly be driving LAM cell proliferation in angiomyolipomas.

    Messages, codes, signals, hormones, switches, stimulators and suppressors: it's as if all the pieces are falling in place and we are extremely close to finding the answer to this enormously complex puzzle. Although LAM is thought to affect only three or four women in a million, the discovery of how to treat it has tremendous implications for many other more prevalent diseases.

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    NZ LAM Trust charity auction
    Hotel du Vin
    April 19, 2006

    Fabulous weather, breathtaking vineyard setting , sublime food from Peter Gordon and his team in the kitchen.

    170 supporters of the NZ LAM Trust enjoyed a spectacular day.

    MC's Carol Hirschfeld and John Campbell, with Charity auctioneer, Glen Thomsett-Taylor, alongside Chef Peter Gordon were the stars of the day.

    The Trustees are delighted to announce that $52,000 was raised from ticket sales and the auction.

    All funds are earmarked for the continuing LAM Science research programme at the University of Auckland, as scientific investigators here and around the world get closer and closer to discovering a medical and scientific answer to the puzzle of LAM.


    Carol Hirshfield, John Campbell and Lam Director, Bronwyn Gray
       
    John Campbell auctioning off Peter Gordon with Peter's Mum standing by
     

    Notes regarding the LAM Science Research programme Funded in part by the New Zealand LAM Trust

    Principal Investigator at the University of Auckland
    School of Medical and Health Sciences: Assoc/ Professor Mervyn J Merrilees and investigation team

    The first investigations in New Zealand into the abnormal smooth muscle proliferation in the rare lung disease Lymphangioleiomyomatosis ( LAM) began in the Lab of Professor Mervyn J Merrilees in the Dept of Anatomy with Radiology - University of Auckland, in 2001.

    In those first studies Professor Merrilees found that while the abnormal cells are the primary problem, the normal cells of the lung also change their function and produce the wrong kinds of molecules. As a result, the structure of the lung is changed, and the lung becomes less efficient.

    March 2006:

    In studies here in Auckland, coupled with the results of collaborative work with investigators in Australia, USA and Canada, Professor Merrilees has shown recently that it is possible to restore elastic fibres to blood vessels. Elastic fibres are of paramount importance to lung function and we now know that the disease state of LAM is, in part, a result of a disruption to the assembly of elastic fibres. One question that is now being asked by his group, with support of the NZ LAM Trust, is whether elastic fibres can be restored to LAM lung?

    We also know that there appears to be some promise in an old drug, but new to LAM, called rapamycin - isolated originally from soil organisms on Easter Island. There are good reasons for believing that this drug will help not only stop the growth of the abnormal cells but, from Professor Merrilees work, may restore that balance of molecules that are produced in the wrong amounts. Trials are underway in the USA and England and shortly we hope to establish an Australasian trial, based in Sydney.

    All of this research gives us great hope. The work at the University of Auckland indicates there may be a possibility - not only to stop the deterioration in the lung structure and therefore stabilise lung function, but also to find out if it is possible to reverse the damage that has been done.

    The only way we will be able to defeat this disease is to gain more knowledge about LAM lungs and especially about the reasons for such devastating changes, and the only way of gaining new knowledge is through research. Over the past decade the progress on understanding LAM has been remarkable, probably faster than for any other disease, but there is still a long way to go.

    You can help :

    • By making a tax deductible donation to the LAM Trust
    • By sponsoring a research project in the name of a New Zealand LAM patient
    • By directing the Trust to organisations or individuals who may be approached to provide funding
    • By creating a legacy through a family donation or by including the NZ LAM Trust in your Will
    • By supporting and contributing to fund raising events that will benefit the LAM Trust.

    For enquiries on how you can help please email director@lam.org.nz

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    ASB Community Trust funding received
    January 2006

    The LAM Trust is delighted to announce that it has received funding from the ASB Community Trusts for the 2006 year. The funds will be used for a specific LAM Awareness Programme for general practitioners in the Auckland region. The programme will begin in February and will run throughout 2006.

    General Practitioners will be given information about LAM through GP Continuing Medical Education meetings and The LAM Trust is grateful to the ASB Trusts for their financial backing of this extremely important programme. For enquiries on resource material and meeting dates please e-mail director@lam.org.nz


    Giving the Gift of Life
    14 October 2005
    By Kate Buchanan

    Lisa Wishart-Wyeth has no face to recall, no name to pay tribute to. But the teenage girl that fills her thoughts bestowed the Otatara woman with the ultimate gift - a set of healthy lungs that saved her life.

    "Sometimes at night when I can't sleep, I lie there and can feel the rise and fall of my lungs and I think about her and wonder what she was like," Lisa Wishart-Wyeth said.

    Mrs Wishart-Wyeth is one of just nine New Zealanders to undergo a lung transplant operation last year.

    "It's my duty now to protect these lungs, not only for myself but for her and her wishes," she said.

    Mrs Wishart-Wyeth, 38, was diagnosed 11 years ago with the rare and fatal lung disease lymphangioleiomyomatosis, or LAM.

    > Read more of this Southland Times article here.

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    The Virginia Northwood Memorial LAM Science Symposium 2006

    Dates and Venue are now confirmed for the 3rd New Zealand/Australia LAM Science Symposium for 2006: April 30th will see the opening of the 3rd LAM Science Symposium at the Fairmont Resort, Blue Mountains, Sydney, Australia.

    The two day meeting will take place on May 1st and 2nd 2006 and it is expected that this meeting will attract a significant number of clinicians, physicians and investigators from Australia, New Zealand and the United States of America.

    Further notice and details will be posted on this website later in 2005.


    Dying to breathe
    Auckland University News, April 2005

    LAM Trust Director Bronwyn Gray, her daughter Lisa, and Professor Merv Merrilees feature on the cover of the April 2005 issue of the Auckland University News.

    Professor Merv Merrilees is at the forefront of an international research effort urgently trying to understand and find a cure for this devastating (and often fatal) condition, which spurns all familial links, choosing its victims at random.

    > View PDF of this article

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    LAM 10 Years Anniversary10th American LAM Conference
    April 2005

    LAM Trust Director Bronwyn Gray, together with Professor Merv Merrilees, Principal Investigator, LAM Studies, University of Auckland, School of Medicine will attend the 10th American LAM Conference to be held in Cincinnati, Ohio, April 8-10 2005.

    Professor Merrilees will present the results of the last two years of his LAM scientific findings at the conference.

    The lead story in the April 2005 University of Auckland "NEWS" will carry an exciting article by editor, Tess Redgrave, about Professor Merrilees' latest work.

    Bronwyn will travel to the USA courtesy of Merck Sharp & Dohme (NZ) Ltd, the New Zealand Company which has consistently supported the work of the LAM Trust since its inception in 1999.


    Bronwyn Gray in StockholmInternational Conference on Rare Diseases
    February 2005

    LAM Trust Director Bronwyn Gray attended the first ever International Conference on Rare Diseases which was held at the Karolinska Institute in Stockholm, Sweden, 14-16 February 2005.

    The conference covered diagnostics, prevention and treatment of rare diseases and focussed on improved possibilties for development of clinical trials and novel treatments for rare disorders.

    Speakers and participants were invited from acadaemia, the pharmaceutical industry, patient organisations, the European Commission, The US National Institutes of Health and other policy making organisations.

    Bronwyn attended the Stockholm meeting with the Executive Director of the NZ Organisation for Rare Disorders, John Forman, from Wellington.


    2nd LAM Symposium - Hotel du Vin, Auckland
    2-4 May 2004
    by Jen Shieff, LAM Trustee

    Surrounded by autumnal grapevines, the Hotel du Vin in its peaceful setting south of Auckland was an ideal venue for the second New Zealand/Australian LAM Symposium. Organised by LAM Trust Director Bronwyn Gray and Medical and Scientific Advisory Committee Member Professor Merv Merrilees, the Symposium was attended by 50 people, from four countries, representing universities, laboratories, research centres and hospitals, the LAM Trust supporter Merck Sharp & Dohme and of course several NZ LAM Trustees, myself included.

    The ASB Bank Visiting Professor Thomas Colby from the Mayo Clinic Scottsdale, Arizona, was the keynote speaker. Prof Colby, a world renowned pathologist gave us an overview of all the disciplines represented. Dr Jilly Evans, a scientist with Merck USA, talked about activating pathways resulting in increased cell migration and proliferation. And she also had challenging questions to ask of almost every speaker, searching for pathways and linkages through the various contributions.

    If there was one topic that came up more than any other at this Symposium it was cell migration. This was followed closely by what's happening in the extra cellular matrix. Everyone acknowledged the speed at which thinking about LAM is moving and the developments that have happened even since the Cincinnati Lam Meeting which was only a few weeks ago.

    The most exciting event over the past two years has been the discovery that rapamycin may actually be able to be used to slow the speed of abnormal smooth muscle cell proliferation in LAM and Tuberous Sclerosis patients. Plans will be made soon to design a rapamycin study for Australasian LAM patients.

    The hope associated with this development is remarkable. And Dr Hetty Rodenburg captured the spirit of hope in her moving presentation reminding all clinicians and caregivers to never extinguish hope in the ones they care for.

    I will continue to take a fascinated bystander's interest in the efforts of the medical and scientific experts who have come together with such passion,generosity and enthusiasm to find a cure for LAM. They are focusing on the mysteries and proudly taking part in the fast unfolding story of this tragic disease.

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    International LAM Science Conference
    April 2004

    NZ LAM Trust Director Bronwyn Gray attended the annual International LAM Science Conference held in Cincinnati Ohio in March. Trustees Dr Hetty Rodenburg of Wellington and Assoc Professor John Kolbe of Green Lane Hospital, Auckland also attended; Dr Rodenburg facilitated specialist sessions with LAM patients and their families and Dr Kolbe attended as the senior respiratory physician looking after LAM patients in New Zealand.

    The 2004 LAM Foundation Scientific Research Conference, held concurrently with the LAM patient and family conference, bought together researchers from diverse disciplines to discuss the pulmonary smooth muscle cell infiltration and cystic lung destruction that occurs in Lymphangioleiomyomatosis (LAM).

    The work of established LAM investigators with parallel interests in molecular genetics,pathology,smooth muscle biology,lung remodelling and cell biology was presented and discussed. The conference saw the largest ever number of investigators - more than 130 basic and clinical scientists, meeting together - united in pursuit of one common goal; to further understand and to conquer LAM.

    Green Lane Hospital's Dr John Kolbe, attended a pre conference meeting, together with a number of respiratory specialists from around the world, who came together to discuss a proposal to look at a potential International LAM patient treatment trial involving the drug rapamycin.


    Professor Tom Colby, Professor of Pathology at the Mayo Clinic, Scottsdale Arizona (left) and Assoc Professor John Kolbe, Department of Respiratory Services at the March 2004 American LAM Conference in Cincinnati, Ohio
     
    LAM Foundation of America's LAM Poster

    Over the past year, a number of American women with LAM, have taken part in a voluntary trial using rapamycin, the anecdotal results of which, indicate that a larger, more formal potential trial could be planned and got underway.

    Twelve specialist respiratory physicians from eleven countries including New Zealand/Australia, USA, Canada, England, Germany, France, Brazil, Argentina, Italy and Japan, attended the meeting and the New Zealand LAM Trust is very pleased that patients here and in Australia who may be candidates for a trial using rapamycin will have the opportunity of being informed of the planning of any trial.

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    New Zealand/Australia LAM Symposium
    May 2004

    At the beginning of May the second New Zealand / Australia LAM Science Symposium will take place at the Hotel du Vin Conference Centre south of Auckland.

    World renowned New Zealand scientist, Dr Jilly Evans, Director of Pharmacology at Merck & Co New Jersey, will speak at the symposium and will chair sessions on both days of the meeting.

    Professor Merv Merrliees from the University of Auckland will present information and give an overview of the LAM science programme that is currently in progress in his lab.

    Respiratory clinical and basic science investigators will attend this meeting from the USA, Australia and from all centres in New Zealand.


    NZORD meeting
    28 May 2004

    On May 28, LAM Trust Director, Bronwyn Gray will speak on the first day of the NZ Organisation for Rare Disorders Conference which will be held at Te Papa in Wellington; more information on this inaugural meeting can be found at www.nzord.org.nz

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    2004 ASB Bank Visiting Professorship announced
    2 October 2003

    The LAM Trust would like to announce that Professor Thomas Colby has just been confirmed the recipient of the 2004 ASB Bank Visiting Professorship and the Trust is delighted and honoured to host Professor Colby as their keynote speaker for the 2nd NZ/Aust LAM Scientific Symposium.

    Registration of interest in attendance at the symposium on May 2, 3 and 4 are open by email to either:

    Bronwyn Gray
    Director, NZ LAM Trust
    email: director@lam.org.nz

    Assoc Professor Merv Merrilees
    Dept of Anatomy with Radiology, University of Auckland
    email: m.merrilees@auckland.ac.nz


    LAM science project grant funding awarded
    14 August 2003

    The Trustees have great pleasure in announcing the recipient of the 2003 LAM Science Project Grant Funding. Associate Professor Merv Merrilees of the Department of Anatomy with Radiology at the University of Auckland School of Medicine has been granted LAM Funding of $80,000 for his project titled "A new View of LAM- a focus on changing the matrix".

    Prof Merrilees will begin his work in September and the project will be funded over the next eighteen months.

    The Trustees acknowledge and thank the members of the LAM Scientific and Medical Advisory Group for their review of the Application and wish to congratulate Prof Merrilees on his success.

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    E.B. Firth Charitable Trust donates
    28 June 2003

    The Trustees wish to acknowledge and thank the E.B.Firth Charitable Trust for its generous donation of $2000.


    American LAM Foundation Conference in Cincinatti, USA
    May 2003

    NZ LAM Trust Director Bronwyn Gray and NZ LAM Trustee Dr Hetty Rodenburg attended the annual American LAM Conference, held in early April in Cincinnati Ohio.

    This year's medical/scientific and patient and family meeting was the largest yet with over 100 doctors, scientists and investigators from the USA, Canada, Great Britain, France, Switzerland, Germany, Spain, Ireland, Peru, Thailand and New Zealand attending the scientific sessions and presentations over three days.

    LAM patients and members of their families spent valuable time in patient oriented support sessions and patient education sessions.

    Dr Rodenburg addressed the opening session of the meeting as keynote speaker and facilitated patient workshops throughout the weekend; she was also a guest speaker to medical students and medical staff at the University of Cincinnati School of Medicine. Hetty's expertise and experience as a Kubler Ross Counsellor and as a General Practitioner dealing in Loss and Grief in chronic life threatening illness, was hugely welcomed at the meeting.

    Basic and Clinical Science sessions were wide ranging and included presentations on new insights into the pathology of LAM, highlighting new research on the cellular and genetic basis of smooth muscle proliferation in the disease.

    There was a feeling of hope and optimism about the new cutting edge research in the USA and around the world and the New Zealand LAM Trust is among LAM organisations in 6 countries lobbying for funding for the setting up of an international patient data base focussing on the number of women around the world suffering from the disease.

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    LAM Patient Survey compiled
    December 2002

    The results of the first ever New Zealand/Australian LAM patient survey have just been compiled and have been submitted to the British Medical Journal Thorax.

    The authors, Dr Alessandra Sandrini and Dr Debbie Yates from St Vincents Hospital in Sydney hope that the data will be published and they thank all those patients in New Zealand and Australia for taking part.


    Dr Alessandra Sandrini and Dr Deborah Yates

    Huckleberry Sports and Charitable Trust donates $10,000
    December 2002

    The Trust is delighted to accept the generous donation of $10,000 received this week from The Huckleberry Sports and Charitable Trust in Turangi. This is the second donation of monies from The Huckleberry Trust and will be used to help produce the LAM Awareness video.


    J.R. McKENZIE Trust donates $5,000
    December 2002

    The Board of the J.R. McKenzie Trust in Wellington has just advised the LAM Trust of their decision to make a $5000 donation to our fundraising efforts. Again the Trustees are delighted to receive this grant which will go towards the cost of the Summer Studentship.

    The 2003 year will hopefully bring increasing opportunities for the Trust to work on education about LAM to General Practitioners throughout New Zealand as well as to the general public.


    Laptop donation
    December 2002

    The Trustees wish to give an enormous thank you to Jill McClatchy, the owner of Titirangi Realty in Titirangi, Auckland for her company's generosity in buying a Toshiba Laptop for the LAM Trust.

    Having the new, state-of-the-art laptop will mean that LAM Trust work and communications will be able to be maintained at all times; the Trust truly appreciates Jill's support and generosity.

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    Summer studentship
    November 2002

    The members of the LAM Trust's Medical and Scientific Advisory Group are delighted to announce that the Trust will fund a Summer Studentship at the University of Auckland's Department of Anatomy. The three month project will begin in December and run through to March 2003.

    This funding will support the second LAM Science project to take place in the laboratory of Professor Merv Merrilees and will involve new and significant possibilities in the investigation into the mechanisms involving LAM.

    The recipient of the Summer Studentship funds, Elyshia Hankin, is currently finishing her masters thesis on the Extra-Cellular Matrix of LAM Lungs and is ideally placed to carry out the proposed research.

    The LAM Trust will also contribute towards costs and running expenses for the project.


    NZ Australia LAM patient survey
    November 2002

    LAM Trust Director Bronwyn Gray will meet with Dr Deborah Yates and Dr Alessandra Sandrini at St Vincents Hospital, Sydney in early December to discuss the results of the first New Zealand/Australia LAM patient survey. The survey was completed by patients on both sides of the Tasman during September and October.

    The Trust wishes to acknowledge and thank travel broker Angela Manase and her company "GO Travel" whose generosity has made this trip possible.

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    Rubicon donates $20,000
    October 2002

    The Trustees would like to acknowledge and give enormous thanks to Rubicon N.Z. Ltd and to Dr Jilly Evans and Rubicon CEO Luke Moriaty for the largest one-off donation made to the LAM Trust since its inception in 1999.

    Rubicon donated $20,000 which will enable the Trustees to consider a new and exciting LAM science pilot project to be undertaken at the University of Auckland's School of Medicine.

    The past months have seen some exciting breakthrough work in LAM science and investigation taking place in the United States; the funds from Rubicon, along with funds raised over the past two years in this country will enable the NZ LAM Trust and the Trust's Medical and Scientific Advisory team to support a scientific programme here in New Zealand which will be part of the collaborative effort to find the cause and ultimately the cure for this disease.

    Trust director Bronwyn Gray welcomes any enquiries via this site regarding the latest developments in LAM Scientific work.


    First LAM research programme completed

    The first New Zealand LAM research programme which began earlier this year and involved LAM patients and controls took place in the laboratory of Professor Mervyn Merrilees at the Auckland School of Medicine and was completed last month; results and acknowledgements have been sent to all who took part and the scene is now set for further investigation.

    The Trustees share the excitement of investigators, researchers and LAM patients here and around the world as discoveries of possible reasons why LAM cells grow and multiply without the usual controls are being reported. We look forward to next year's LAM Scientific Symposium which will take place in Cincinnati, Ohio.

    Trustee, Dr Hetty Rodenburg from Wellington will attend the Cincinnati Conference and has been invited to give an address on the opening night. Director Bronwyn Gray is also expected to attend along with Professor Merrilees and others, including LAM patients from New Zealand.

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    New Zealand/Australia LAM connections

    After LAM Trust Director, Bronwyn Gray's recent a trip to Sydney and discussions with LAM scientific and medical colleagues, the first joint NZ/Australia questionaire of LAM patients in both our countries is underway.

    NZ LAM patients are to be contacted during October and will be given the opportunity of taking part in the questionnaire.

    The September/October 2002 patient survey has been prepared by Dr Alessandra Sandrini, who is the research fellow at St Vincent's Hospital in Sydney. Dr Sandrini is working with Dr Deborah Yates, Medical Advisor of the LAM Australia and we very much look forward to continuing collaboration on LAM Matters between our two countries.

    A special thanks to Ivy O'Leary of Auckland who generously funded Bronwyn Gray's recent trip to Sydney.


    Saving Lisa: One Woman's Fight Against LAM
    by Carroll du Chateau, The New Zealand Herald
    4 May 2002

    Extreme tiredness was part of the picture for Lisa Gray. Just short of her 29th birthday, the accomplished family lawyer had suffered exercise-induced asthma for several years. Sometimes she woke so short of breath she almost choked. A couple of coughing fits had ended in blood-sprayed tissues...

    Read more at: The New Zealand Herald


    Inaugural New Zealand/Australia LAM Symposium a Huge Success

    Report by Dr John Kolbe
    Green Lane Hospital, Auckland
    on behalf of the Scientific Organising Committee

    The inaugural New Zealand/Australia LAM (Lymphangioleiomyomatosis) Symposium was held on Waiheke Island in New Zealand's Hauraki Gulf on May 3-5, 2002. Prominent US investigators were joined by New Zealand and Australian researchers with a wide variety of interests including airway smooth muscle, matrix proteoglycans, gene therapy and transplantation. The Symposium was organised by Bronwyn Gray, Director of the New Zealand LAM Charitable Trust and was an enormous success with free and frank exchange of ideas between leading researchers who addressed the problem of LAM from widely different angles.

    LAM is an uncommon condition occurring in 1-5/million women, although substantial under-diagnosis is likely. LAM may occur in isolation (sporadic) or as part of the spectrum of disease in tuberous sclerosis (TS). Mutations in two genes (TSC1, which encodes hamartin, and particularly TSC2 which encodes tuberin) have been implicated; with germ cell mutations reported in the disease associated with TS and somatic mutations in sporadic LAM. The abnormal cell in LAM has a smooth muscle phenotype and while research focuses on treatment or a cure for LAM, it is recognised that a better understanding of smooth muscle proliferation and migration has implications for a variety of other conditions including asthma and idiopathic pulmonary fibrosis.

    Frank McCormack from the University of Cincinnati, described the research initiatives funded by the US LAM Foundation, provided an overview of research into the condition and described data that implicated the TSC2 gene product, tuberin in the regulation of critical molecular pathways that modulate smooth muscle growth.

    Deborah Hunter, from the Anderson Cancer Centre in Texas, outlined the 3 major research directions (genetics, smooth muscle biology and hormones) in this condition and described an animal model and in vitro systems used to study the condition.


    Dr John Kolbe (left) and Dr Frank McCormack
     
    Dr Deborah Hunter

    The symposium was an enormous success and one which greatly exceeded the expectations of the Scientific Organising Committee. The generosity of spirit shown by the delegates in giving up their time, and in the free and frank exchange of information was unique in my experience. Delegates from very different backgrounds and who might never otherwise have interacted on scientific matters engaged in discussions on new concepts and hypothesis about LAM, new research directions and novel ways of interpreting and applying research data. The fact that a cure for LAM remains currently elusive was acknowledged and presentations on control of dyspnoea, grief and loss and the role of the primary care doctor were very well received; as were the talks on the role of lung transplantation and the potential role of gene therapy. There was universal acclaim for the content and worthiness of the meeting from a medical and scientific point of view. Quotes form Australian researchers included: "Don't thank me (for attending) I got an enormous amount out of this meeting". "This is the best meeting I've been to in the last decade".

    The success of the meeting reflected not only the choice of delegates but the attention to detail in all respects and the hard work and generosity of an enormous number of people. Merv Merrilees on the Scientific Organising Committee deserves special mention. The large number of sponsors were acknowledged as was the ongoing support of the New Zealand LAM Trust from Merck Sharp & Dohme. Heartfelt thanks were extended to the owners of the houses in which delegates stayed but also to the tremendously generous owners of Longhouse, Waiheke Island. A debt of gratitude is also owed to that small army of helpers who organised, "watered"/"wined"! and fed and transported delegates. Things ran like clockwork in a wonderfully understated way. This meeting could not have taken place without Bronwyn Gray - and its success is a testament to her enthusiasm, effectiveness, diligence and filial love.


    LAM Trustees, Hetty Rodenburg (left) from Wellington, and Dinah Morrison from Auckland
     
    LAM Trustee and Chef de Cuisine, Jan Barrett

    For the NZ LAM Trust and its Trustees, this will be an enormously hard act to follow, but represents a phenomenally successful first major initiative of the Trust.

    To quote Winston Churchill: "This is not the end, this is not the beginning of the end, but it may be the end of the beginning".

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    Human Contact Drives Scientists
    by Simon Collins, Science Reporter, The New Zealand Herald
    4 May 2002

    Scientists working on human genetics have been stirred into giving priority to a rare lung disease by meeting some of the young women who suffer from it.

    Intensive work by more than 30 scientists in the past five years has tracked down a gene called TSC2 that is believed to go haywire in women who have the rare disease lymphangioleiomyomatosis, or LAM for short.

    Read more at: The New Zealand Herald


    Growing Human Lungs' a Step Closer
    BBC - Health
    16 May 2002

    The prospect of growing human lung parts for transplant has been brought closer by successful tests in mice. Scientists from Imperial College London, UK, have, for the first time, changed mouse stem cells into a specific type of lung cell.

    Read more at: The BBC


    LAM Trust donates $3000 to research
    April 2002

    Bronwyn Gray, NZ LAM Trust Director, (right) presents a cheque for $3000 to Masters student Elyshia Hankin (centre) for her invaluable research work into the causes of LAM. Professor Merv Merrilees (left), Head of Department of Anatomy with Radiology at Auckland University School of Medicine is the primary investigator.

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    LAM Trust diretor returns from American conference
    March 2002

    New Zealand LAM Trust Director Bronwyn Gray recently attended the annual American LAM Foundation Basic and Clinical Science Conference held in Cincinnati at the end of March. The Conference hosted LAM patients and their families along with the largest gathering to date of scientists, clinicians and physicians from around the world.

    Associate Professor Merv Merrilees, Head of the Department of Anatomy with Radiology at Auckland University School of Medicine, joined with 80 researchers from Rotterdam, London, Moscow, Milan, Toronto, Nottingham and all over the United States to present papers and take part in discussion topics which covered diverse areas of LAM science research.

    Over the three days, 26 papers were presented and covered major aspects of LAM science and research with sessions on LAM smooth muscle proliferation, hormone receptors, LAM pathology and cell biology as well as the genetics of LAM.

    Philadelphia-based New Zealand scientist and leading cell biologist, Dr Jilly Evans chaired the cell biology session at which Associate Professor Merv Merrilees presented his paper.

    Running concurrently with the science sessions was the LAM patient and family conference attended by approximately 100 patients from countries including the USA, Canada, Brazil, Thailand, New Zealand and Australia.


    Bronwyn Gray, NZ LAM Trust Director with Sue Byrnes, Director of the American LAM Foundation - at the Cincinnati Gala
     
    Wellington LAM patient Sally Birch with Associate Professor Merv Merrilees, from the University of Auckland
     
    Soon to visit New Zealand: Dr Frank McCormack, Scientific Director of the American LAM Foundation, with Dr Deborah Hunter from the M. D. Anderson Cancer Centre, at the LAM Foundation Gala

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    Auckland Medical Research Foundation funding
    December 2001

    The LAM Trust gratefully acknowledges the Auckland Medical Research Foundation in its decision to assist with funding towards two return airfares for the keynote speakers to the inaugural LAM Science Symposium in May 2002.

    Funds from the Sir Harcourt Caughey Fund have been granted by the AMRF in recognition of the importance of next year's symposium. The keynote speakers; Dr Frank McCormack and Dr Deborah Hunter will also give clinical lectures in Auckland before they return to the USA.


    Chef Peter Gordon lends support to LAM Trust

    New Zealand born London-based chef Peter Gordon gave his support to the LAM Trust in 2001 by cooking for 100 guests at the LAM Trust's Fundraising Dinner.

    The event, held at Point 5 Nine Restaurant in Point Chevalier, raised $25,000.

    This money is currently being used for two LAM science projects at the University School of Medicine.


    Merck Sharp & Dohme award grant

    Auckland University Masters student Elyshia Hankin has this month received a $5000 grant from Merck Sharp& Dohme (NZ) Ltd.

    Elyshia is working under Professor Merv Merrilees at the School of Anatomy and her work is with New Zealand's first LAM science project. The MSD grant is in recognition of Elyshia's commitment and focus to this project.


    New Zealander appointed to LAM Advisory Board, USA

    New Zealander Dr Jilly Evans, a Director of MERCK in the USA and recent key note speaker at Auckland's Knowledge Wave Conference has recently been appointed to the Scientific Advisory Board of the American LAM Foundation.

    Dr Evans, a world renowned cell biologist is an expert in molecules that have been implicated in smooth muscle proliferation.


    Founding trustee appointment

    Founding LAM Trust member Bronwyn Gray has accepted a position on the Board of NZORD (New Zealand Organisation for Rare Disorders). This national body was recently established to give a voice to the many groups and individuals suffering from rare disease.

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