LAMbassadors
Heather Telford, LAMbassador, LAM Australasia Research Alliance (LARA) - Australia
My partner Jeff and I live in the mountains outside Melbourne, Australia in a picturesque eucalypt forest. Our local area is an artist's paradise and provides inspiration for my interests in painting and photography. Until last year I helped manage Jeff's busy medical practice but now I work from home.
Over the past twelve months I have worked with a small group of women to establish a new LAM organisation, LARA (LAM Australasia Research Alliance). With a thirteen-member Scientific Advisory Board made up of experts from Australia and New Zealand, LARA's main goal is to identify opportunities for research. Our Patron, Bettina Arndt, is a well-known social commentator and columnist who has helped raise the profile of LAM in Australia with feature stories in a national women's magazine and on Australian Story, a popular weekly TV program on our national broadcaster.
As the inaugural President of LARA I coordinate fundraising, communication, publicity, promotional material, and education. This year I have organised a specialised LAM Clinic at Melbourne's major transplant hospital, and travelled interstate and overseas to attend LAM meetings.
Viera Reptova, LAM Austria, Austria
I was diagnosed with LAM in 2001, after an AML operation. I tried hard to continue with my work but since summer 2002 I had to retire at the age of 52 years. I had worked in the field of physiotherapy both as a physiotherapetist and lecturer. In 1993 I graduated and was awarded the MA degree. Due to two operations I had to resign to my doctoral study, which I already had started.
As all LAMmies, I also got information about LAM from the LAM Foundation home page and then I contacted FLAM because my French was better then English. Since the end of 2002 I have been in contact with Susanne Geiling from LAM-De and I attended the LAM-De meeting, on March 2003, as well as the subsequent meetings of LAM-De, being a member of German association. As a representative of LAM-De, I attended on Eurolam Okt, 2003 in Paris. The Eurolam gave me the motivation to establish a LAM group in Austria.
Thence forward I'm trying to find more LAMmies in Austria. In year 2005 I prepared a home page for the prospective LAM group in Austria. Thanks to the hand of Susanne Geiling from LAM-De, I contacted Doris Wollein and then Dr. Pescosta. Finally together with Doris and Sylvia Hacker we established in July 2006 a self-help group LAM Austria.
Currently there are 6 LAMmies joining the LAM Austria meetings and another lady is in touch with us per emails. We focus our activity on building our group and we aspire to get Austrian public and doctors more informed about LAM as well as to support research.
Thanks to the very good contact with Michelle Gonsalves and Susanne Geiling I have learned how important is the international cooperation among LAMmies. Now I am beginning to communicate with LAMmies in Slovakia and I will help them to build a self-help group there. (I come from Slovakia originally and I live since 15 years in Austria).
Flavia Patitucci Sobroza, LAMbassador, Associação LAM do Brazil - Brazil
My Name is Flávia Patitucci Sobroza. I am 43 years old and have a 12 years old daughter named Úrsula. I was diagnosed with LAM in 1994 during my pregnancy but I am sure that LAM starts it's symptoms at least 5 years prior my pregnancy. In 1994 not much was known about LAM in Brazil, so to avoid the presence of estrogen in my body, I performed an oforectomy. After I delivered Úrsula and recuperated from 4 pneumothoraxes, I returned to work as a Publicity Graduate and worked in a Rede Globo, a television channel as a Marketing assistant until 2000 when I decided stop and retire due to worse of LAM.
In 2002 I found The LAM Foundation and my life changed. I received lots of information about the disease, the Foundation's work, and also NIH LAM Protocol. I have attended LAMposium since 2003 and have participated in the NIH LAM Protocol since 2004. I learned enough about LAM to share all this information with other Brazilians LAM Patients who have never heard anything about LAM and mostly don't speak English. I got in touch with Dr. Carlos Carvalho, one of the main doctors in Brazil who follows patients with LAM regularly in Hospital das Clinicas in São Paulo city, and asked for his help.
In 2005 I met Simone, a LAM patient who lives in Rio de Janeiro and got very close to her. She thought that we must organize ourselves better and decided to found the ALAMBRA - Associação LAM do Brasil (LAM Brazil Association). The knowledge about LAM has spread and now we have around 25 LAM Patients registered in the LAMBRA database.
Marsha Cohen, LAMbassador, LAM Canada - Canada
I was diagnosed with LAM in 1995 having first been treated for asthma and seeing two respirologists prior to diagnosis. At first, my life was pretty much the same, but by 2005, due to LAM, I retired from my work as a medical researcher.
I first contacted the LAM Foundation in 1995 and was thrilled to learn that there was a patient support group. I attended LAMposium several times as a researcher (my study was of the psycho-social aspects of LAM) and derived many benefits from the Foundation. I wanted to help raise funds for LAM research, but realized that this would not be possible unless there was an organization to issue tax receipts for donations in Canada.
In 2005, my husband and I founded LAM Canada. Our primary goal is to raise funds for LAM research and to date we have sent about $100,000 to the US LAM Foundation. Our other goals are to provide patient support and to increase awareness of LAM. We produce a newsletter twice a year and have held a number of fund raising events. We have created our own logo and stationary, and are redoing our website this year. Along with physicians from the University of Toronto and the Toronto General Hospital, we have written and received a grant to have Toronto designated as a site for the MILES trial. This year our plans are to hold two major fundraising events, and to increase awareness of LAM among physicians and nurses by writing articles in the main Canadian medical and nursing journals. We know of 57 women with LAM in Canada.
Lily Wong, LAMbassador, LAM China - China
I am the organizer of LAM China and started the official LAM China's website in April 2006. The objective of the website is to provide reliable and helpful information for Chinese LAM patients. I am a LAM patient, was diagnosed in Peking Union Medical College Hospital in 2002. Dr. Kai-Feng Xu is my doctor-in-charge and he is also the organizer and consultant to LAM China. LAM China is in existence for one and a half year now. We conducted a survey on LAM patients in China and received around 30 registrations. At the start of 2007, the first LAM handbook in Chinese was launched, until now it is the first and only handbook to educate the Chinese about LAM disease in China. Besides China , many other patients from Singapore, Hong Kong and Taiwan also download the handbook from LAM China's website. There is also a chatting group for Chinese LAM patients.
On April 10, my story was featured on China's Central TV Channel. Professor Yuan Jue Zhu and Dr. Kai-Feng Xu were invited as guest specialists to discuss about my clinical problems. This 50-min TV program was on national airtime and the objectives were to educate the public and create awareness on what is pneumothorax and pleural effusion and people who experience these symptoms may suggest a rare disease, introduced the LAM China and the drug Rapamycin. The response to this program was great. Lots of messages were sent to LAM China's website and a few more LAM patients and suspected cases contacted us.
I obtained my master degree in Information Technology from Maastricht School of Management of Netherlands in 2000. I work as an editor in Henan TV station of China. I planned to attend the meeting of WLPC in March 2007 but had to cancel my trip to the America due to my fourth pneumothorax. I have stopped work since then to recuperate at home and am currently on treatment with Rapamycin as well as traditional Chinese methods. I am feeling better each day; so my message to everybody, especially my LAM sisters is: Don't give up, everything will be fine.
Gill Hollis, LAMbassador, LAM Action - UK
I'm married and live in the Scottish capital city, Edinburgh. My lung problems began in 1987, aged 22. I'd always been fit and healthy, so it was a shock when my lung collapsed soon after a trek in the Himalaya. Five years later, I was diagnosed with LAM and eventually, in 2004, I received the miracle of a single lung transplant.
Initially, I returned to work as an investment manager, and at first it was a huge novelty to be back to work again properly. But I realized that I wanted to have more control over my life to concentrate on the work projects that interested me, and to allow time for family, medical appointments, charity work related to LAM and transplantation, and sport (post transplant, I've been kayaking, skiing and golfing, and have even learnt to rollerblade). So last autumn I started working freelance, from home, as a financial writer. I've had no regrets at all. It's ironic that it took a transplant for me to achieve a better life/work balance!
When I was first diagnosed, it was very hard to get information about LAM and it was literally years before I met another LAM patient. Therefore, it was very reassuring to talk to Sue Byrnes around the time that she was establishing the LAM Foundation and, subsequently, to hear about other British LAM patients through LAM Action, following its inception in 1997. Today, the primary aims of LAM Action are very similar to those of the LAM Foundation. We provide information and support to LAM patients and their families, and raise awareness of and advance research into the condition. It's fantastic that today's improved global communications allow us to work together to achieve these common goals!
Corine Durand, LAMbassador, Association FLAM - France
I am 43, married, and have a daughter aged 14. I live very close to Poitiers, in France (between Paris and Bordeaux).
I used to be a management secretary but I had to stop working in 1998 because of LAM. My first LAM symptoms appeared in 1995. I had a pneumothorax when I was in the 7th month of my pregnancy. Two months later I had a chylothorax. LAM was diagnosed at that time after a biopsy. During the 10 next years my breathing capacity decreased steadily so that I had to be on oxygen for a few months before I had a single lung transplant in December 2004. Everything has been all right so far and I can really enjoy life again and practice some of my hobbies such as gymnastics and choral singing.
Of course, having LAM completely changed my life. I liked my job very much but I had to suddenly stop working. I had never thought about being a housewife and the first times were quite difficult and depressing. Moreover, having a very young child and not knowing how the very near future is going to be made me really anxious.
In 2001 another LAM patient, Michelle Gonsalves, contacted me and informed me about her intention to create a LAM patient group in France. After several meetings I decided to involve myself in this French organization, FLAM, and I became more and more active over the years.
Unfortunately Michelle died very suddenly on August 31st, 2008, not directly because of LAM nor of the transplantation she had several years ago. I was asked by our committee to take over as president of FLAM and I accepted straight away. We are all really determined to carry on the huge work Michelle has done over the last years and follow up her real struggle against LAM. My greatest wish – and it also was hers - is that our work, together with other organizations all over the world, can lead to an effective treatment for LAM.
Susanne Geiling, LAMbassador, LAM Selbsthilfe Deutschland - Germany
I am a graduate Designer and have built a Design office in Leipzig/Germany with my husband, Bernd in 1993. I had my first pneumothorax one year later and passed the usual ordeal of recurrent pneumothoraces, surgeries, and misdiagnoses until 1998, when I finally got my diagnosis of LAM. The first contact with The LAM Foundation was established in 2001 when I managed the booth for The LAM Foundation at the European Respiratory Congress in Berlin. One year later I organized the first LAM-patient's summit with twelve patients in Leipzig. This has become an annual event and patient numbers have been doubled each year since then. Since I was physically not able to run the business any more, I left the company the same year and have devoted my life to LAM self-help work instead. In September 2005 I found it was time to form a legal entity, which is called "LAM Selbsthilfe Deutschland e.V.", a non-profit association. I became president, accompanied by two other board members. This has been a necessary step to have admission to official funds and sponsoring. Nine years experience as boss of my design office and a sure instinct in handling patients and their affiliations, as well as health professionals, have been helpful in bringing DLAM forward.
Reina Endo, LAMbassador, J-LAM - Japan
I am Japanese, born and raised mostly in Tokyo, but having spent a couple of years in Lynnwood, Washington during grade school, you may see traces of American inside. I have been working as a science/health TV show director for the last 11 years, interviewing doctors and patients, but did NOT imagine myself being one so soon. From April, I am a graduate school student at Keio University, majoring in health services and management. I found out about my LAM 2 years ago after my first pneumothorax. Since then, I've suffered from 6 pneumothoraces, underwent mechanical pleurodesis at Stanford University, but my lung didn't hold up and ended up getting lung covering surgery in Tokyo, which has finally stopped my pneumothoraces. There are many LAM patients in Japan who are seeking help, but given that we are not culturally open about our health issues, it's been difficult to connect with other patients like it is done in western countries. While my condition allows, I would like to take part in changing this, and hopefully collaborate internationally, integrating each country's specialty, to seek cure in LAM.
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.
Kristin Seim, LAM Norway, Norway
.JPG "Kristin Seim")
I am 39 years old, and live in Bergen, at the western coast of Norway. This is a beautiful town surrounded by mountains and green forests, with relatively warm wet winters and cold wet summers. I live near the top of one of those mountains with my husband and two cats. I was diagnosed with LAM in 2002, but I think that my symptoms first began early in the 1990's. Before I got LAM, I have been highly active in sports, especially bicycling. I am working as a clinical psychologist.
Just now I am working to get the Norwegian LAM patients connected through a web-page and a discussion group at the internet. With this I also get some help from my husband, who is a professor at the University.
OSC Agency, LAMRomania, Romania
OSC is a business-to-business communication & public relations agency based in Romania. The Board of the company was amazed about the efforts the LAM Foundation is doing in order to find an effective treatment and a cure for LAM. OSC managers have attended for the first time the LAMposium in USA in April 2007 and they had the opportunity to meet the LAM Foundation staff and the LAMbassadors from all over the world. Thus, OSC have decided to join the LAMbassadors efforts, assuming the LAM Foundation mission statement: to serve the scientific, medical and patient communities in my country, by offering information, resources and worldwide network of hope and support.
As a business-to-business communication agency, OSC is running different programs targeted to both medical communities and to health officials in Romania. OSC is using its corporate expertise in order to build a LAM national communication agenda, addressing both to pneumologists, surgeons and to health officials. OSC goal is to provide easy access to all the information available worldwide about LAM, to build a strong specialists community, to help fundraising efforts of LAM Foundation and to develop medical LAM reference centers in Romania.
OSC opened in 2007 the national LAM website www.lamromania.ro and started developing the first medical reference center in Iasi, at the Pneumology Hospital, under the coordination of doctors Traian Mihaiescu, Mugur Bosinceanu and Cristina Grigorescu. In October 2007, at the Romanian National Congress of Pneumology (targeting an audience of more than 400 pneumologists ), with a 30 minutes presentation on LAM basics, OSC have officially launched the first LAM information and education program in Romania.
MaLuz Vila, LAMbassador, AELAM, Spain
I am MaLuz Vila, president of AELAM, LAM Spanish Association, since mid 2006, and as you can see, I am fairly new in this position. Affected by LAM and diagnosed in 2005, after an kidney angiomyolipoma in 1990, and several pneumothoraxes, I can say that I am lucky, since my pulmonary function is almost normal. I studied Business Management and Administration. I am married and I have two children.
Our organization was founded in 2002 by Asuncion Valdivielso, who also has LAM. After having both lung transplanted in 2005, she decided to enjoy her family and to leave her position in the association, but she continues collaborating and represented us this at the WLPC meeting.
Our association gives information and support to those affected with LAM in Spain and Latin America. We have translated The LAM Foundation's valuable LAM Patient Handbook, and in it have found an answer to many doubts we had about LAM, and we don't feel so isolated now. We held an annual meeting in Madrid where a team of neumologists explained us the latest news about the disease and solved our doubts. We still have much to do, as joining all Spanish LAM affected together, so that we can have a better understanding of disease. This would make easier the study of the cases and the different ways in which it develops. And so the beginning of future clinical trials in our country would be more feasible. It is great to be able to collaborate with The LAM Foundation in this new project, since you have been pioneers regarding LAM, and we are humbly following you. Thanks for the hope that you give us.
Susan Milligan, LAMbassador, The LAM Foundation, United States
I was diagnosed with LAM in 1989. I lived and taught school in Cincinnat, Ohio, during the following years and became actively involved with The LAM Foundation from its earliest days. I served on the Board of Directors for six years and and I'm very happy now to be a part of the WLPC. I received a bilateral lung transplant in 2004 and have gratefully enjoyed deep breathing ever since. I retired in 2006 and now live in the Panhandle of Texas where I enjoy being close to her family.
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