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> Events Calendar - - - - LATEST NEWS: NEW! LAM Research Paper from the European Respiratory Society – January 2010: "LAM TV" – LAM patients (and their family members) recounting their First Diagnosis with the disease 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. 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 New hope for sufferers of rare lung disease Acapella has helped a woman with LAM who developed bronchitis 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. 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. ICORD 2008 Conference 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 THE NEW ZEALAND LAM TRUST --- A RARE DISEASE ORGANISATION 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:
Global LAM Patient Summit 2008 LAM TREATMENT ALLIANCE GLOBAL LAM PATIENT SUMMIT 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
"Fund A Cure" campaign 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 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. LAM joins LARA 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:
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 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 Associação LAM do Brasil, Brazil LAM Canada, Canada LAM China LAM Action, England Association FLAM, France LAM Selbsthilfe Deutschland, Germany Italy J-LAM, Japan New Zealand LAM Charitable Trust, New Zealand AELAM, Spain The LAM Foundation, United States 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. LAM Awareness 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 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.
There were some basic facts about LAM that I was already very familiar with before I went to the Blue Mountains:
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.
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 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:
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. NZ LAM Trust charity auction Fabulous weather, breathtaking vineyard setting , sublime food from Peter Gordon and his team in
the kitchen.
Notes regarding the LAM Science Research programme Funded in part by the New Zealand LAM Trust Principal Investigator at the University of Auckland 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. 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?
For enquiries on how you can help please email director@lam.org.nz ASB Community Trust funding received 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 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. 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.
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.
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.
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 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. International LAM Science Conference 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.
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. New Zealand/Australia LAM Symposium 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 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 2004
ASB Bank Visiting Professorship announced 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. Bronwyn Gray Assoc Professor Merv Merrilees LAM science project grant funding awarded 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. E.B. Firth Charitable Trust donates 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 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. LAM Patient Survey compiled 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.
Huckleberry Sports and Charitable Trust donates $10,000 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 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 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. Summer studentship 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 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. Rubicon donates $20,000 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. 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.
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
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.
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.
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". Human Contact Drives Scientists 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 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
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. LAM Trust diretor returns from American conference 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.
Auckland Medical Research Foundation funding 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.
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 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. |
International collaboration
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! 
Bronwyn Gray, LAMbassador, New Zealand LAM Trust - New Zealand
Dying to breathe
10th American LAM Conference
Saving Lisa: One Woman's Fight Against LAM
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 Trust donates $3000 to research
Chef Peter Gordon lends support to LAM Trust
New Zealander appointed to LAM Advisory Board, USATelephone: +64 9 376 4936 .. Fax: +64 9 376 4997 .. E-mail: director@lam.org.nz