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.
