My name is Shirly and I live in Israel. I will turn 32 in March. I was diagnosed with LAM about ten years ago and following my diagnosis I decided to study alternative therapy, naturopathy, in order to try to find a natural treatment for LAM. I work as a medical representative for a company that imports and markets natural products in Israel. I present the products to doctors and provide instruction on the products to pharmacists. I lead a healthy life and eat a balanced diet.

My disease was discovered following a pneumathorax I had about ten years ago. I had a CT scan through which I was diganosed. Since then I had several pneumathoraces on both sides, and have had pleurodesis on both lungs. Later a benign tumour was found on my right kidney, which was later embolised. I am currently not taking any medication, but I am under observation and occasionally have lung function tests.

I married Guy in June 2005. He accepted my illness with great understanding. He is very cooperative, interested in learning more about LAM and always supportive and willing to help.

Initially, it was very difficult for me to accept this rare disease, but I quickly realised that I live like anyone else, working full time and doing everything I love. I hope and believe that the situation will stay like this and that soon there will be a treatment for LAM. I am a member of the LAM Foundation and recently have become part of an Israeli patient group, which is now coming together. Finally I feel I am not alone with this illness in Israel. In the past year and a half Guy and I have been trying for a baby. Despite the risk I am not willing to give up.

Wishing good luck and good health to all of us.

Cezar Caluschi is a Consultant in Communication and PR. Born in 1968, he graduated Economics in Iasi, Romania. He completed different trainings in media communication (California State University), advertising (BBC and University of South Carolina), marketing and business management (Belgium and UK).

He was co-founder and marketing/communication vice-president of one of the largest local dailies network in Romania - the Monitorul network (1991-2000).

In 2000 he founded the OSC Communication Agency (www.osc.ro) and developed an innovative concept of direct communication, successfully used both in public affairs and business communication.

Cezar Caluschi is co-author of the book "Marketing Intelligence" (1997, 1998) and author of the books "Modern Public Relations" (1998) and "A new frontier: the direct communication" (2006).

He is a member of IAA (International Advertising Assoc.) and Rotary Club. Cezar Caluschi is married and has 3 children.

In 2007 he opened the website www.lamromania.ro and started to develop a national LAM information and education program in Romania, with the support of the Pneumology Hospital in Iasi. This was the first LAM action ever in Romania.

My name is Havi Carel and I live in Bristol, UK, with my husband, Samir, and our dog Laika. I am 37 and work as a philosophy lecturer at the University of the West of England. I was diagnosed 18 months ago and have been on a sharp learning curve since. I am a member of the LAM Action Executive Committee, a member of the LF and very involved with the LAM TREATMENT ALLIANCE (LTA). Being able to work with these organizations, especially the LTA where I play an active role in helping plan and run meetings, has been invaluable to my sense of purpose and still being able to have some control over my life.

My diagnosis was a complete shock. I had no idea I had such a serious disease. I was simply handed a diagnostic manual and told to "read about what I've got'. My first question was: so what do I do? When I then found out that there wasn't a treatment for LAM I was stunned. It had not occurred to me that something could happen to me at such a young age and modern medicine would be able to offer so little. I was prepared to do anything: take drugs, have an operation, follow a strict regime, have chemotherapy. But there was nothing to do but observation and treatment of symptoms. My sense of helplessness was overwhelming.

The first few months after my diagnosis were difficult to describe and even more difficult to live. Things then got better as I learned to accept what has happened to me and to co-exist, more or less peacefully, with my illness. My main goal is to assist LAM organizations and researchers in the search for treatment. I continue to work full time and my research has now turned to philosophy of medicine, but I devote some time each evening to my LAM work, a top priority for me. I think that patients often underestimate their importance in pushing research of rare diseases like LAM and that our fate is, to some extent, in our hands.

Alissa Caron is a graduate student at Oxford University studying international public health. Last year she completed a degree in Comparative Social Policy, focusing on health care and health policy, also at Oxford. She is an active member of various health advocacy organizations in the UK (leading Oxford's branch of the national Stop AIDS Society, as well as other activities) and has worked with several public health agencies in the US, including the AIDS Action Committee, Health Care for All, and Physicians for Human Rights. Originally from Boston, MA (USA), she graduated from Williams College with majors in biology and Spanish literature.

Dr. Álvaro Casanova Espinosa completed medical school at the Universtiy of Cádiz (Spain). He did his pulmonary medicine residency at the Hospital Universitario de la Pirncesa in Madrid (Spain) between 2002 and 2006. Since then, he works in the Interstitial Lung diseases Unit in the Hopital de la Princesa in Madrid. He is the medical advisor and member of the Spanish Society of Lymphangioleiomyomatosis.

Ulrich Costabel is Professor of Medicine and Chief of the Division of Pneumology and Allergology at the Ruhrlandklinik Essen, Germany. His research interests lie in clinical and immunological studies in interstitial lung diseases, with a specific focus on rare ILD and on clinical and research applications of bronchoalveolar lavage. From 1994 - 1999 he served as Chief Editor of the European Respiratory Journal. He is Vice President of the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) and organised the World Congress on Sarcoidosis in Essen in 1997. From 2002 - 2005 he has been Head of the Clinical Assembly and member of the Executive Committee of the European Respiratory Society (ERS). He was chairman of the ERS Congress 2006 in Munich.

Vincent Cottin is Professor of Respiratory Medicine, University of Lyon, and respiratory physician in the Department of Respiratory Medicine and Reference Center for Orphan Lung Disorders (Head, Pr J.F. Cordier), Lyon, France. His main interest and clinical research lies in interstitial lung diseases and in "orphan" pulmonary diseases, including lymphangioleiomyomatosis, idiopathic pulmonary fibrosis and idiopathic interstitial pneumonias, pulmonary manifestations of connective tissue diseases and vasculitides, hereditary hemorrhagic telangiectasia, eosinophilic lung diseases, pulmonary arterial hypertension, etc. He is involved in a number of clinical trials on orphan lung diseases, as well as clinical collaborative studies through the GERMOP, a network of French-speaking respiratory physicians working on orphan lung disorders.

Sheila Curristin, PhD is the Director of the Rare Disease Research Program at NDRI (the National Disease Research Interchange) in Philadelphia, USA. She received her education at the University College Galway (NUI Galway) Ireland, and her doctorate in genetics from the University of Rochester School of Medicine, New York. After a fellowship at Yale School of Medicine she ran a research group in an oncology biopharmaceutical company. She joined NDRI in April 2006 and became the first Director the Rare Disease Program in January 2007. Her department includes the National US LAM Resource which was transferred from the National Heart, Lung and Blood Institute to NDRI in March 2007.

I am 34 years old and engaged to be married in May of 2008, at which time my name will change to Stephanie Kalahurka.

I am a life-long resident of central Texas. I graduated from Texas State University in 1997 with a Bachelors Degree in Finance. After graduation, I was employed for two years as a Financial Examiner for the Texas Department of Banking. Thereafter, I was accepted and enrolled in the University of Texas School of Law, where I focused my studies on corporate finance and served as the Managing Editor of the Texas Law Review. After graduation in 2003, I was admitted to the Texas State Bar. I am now a fifth-year attorney, practicing with global capital markets division of the international law firm of Hunton & Williams. My practice specializes in corporate law as it relates to financial institutions. I advise U.S. and international financial institutions in connection with mergers, acquisitions, public securities issues and other corporate and regulatory matters.

I am also a LAM patient. I was diagnosed with LAM in 2003 after multiple pneumothoraces and a lung biopsy. My individual case of LAM is relatively mild. With the exception of the recurring lung collapses and a number of resulting surgeries, LAM has not adversely affected my day-to-day activities. As a result of my diagnosis (and in an attempt to maintain healthy lungs) I have incorporated a routine of distance running/walking into my lifestyle. I have also become involved with the efforts of The LAM Foundation, and currently serve as the Vice Chairman of its Board of Directors. I am excited by the recent scientific and clinical progress as it relates to LAM. I look forward to the day when all of our collaborative efforts will result in a cure.

My name is Corine DURAND, I am 42. I have a daughter aged 13. I live in Poitiers (France). 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.

Of course, having LAM completely changed my life. I liked my job very much but I had to suddenly to stop working. I had never thought of becoming 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 organization and I became more and more active over the years. Even if I naturally feel really concerned about working with this patient group in France, my greatest wish is of course that our work, together with other organizations all over the world, can lead to an effective treatment for LAM.

Dr Jim Egan qualified in University College Galway and he trained in Pulmonary Medicine in the North West Lung Centre, Manchester, United Kingdom. He was appointed as Lead Physician to The Irish National Lung Transplant Programme in 2000.

His research interests include: The Management of Advanced Lung Disease, particularly pulmonary fibrosis and lung transplantation. Dr Egan is currently co-chair of The American Thoracic Society / European Respiratory Society - Guideline Committee for the Management of Idiopathic Pulmonary Fibrosis. He is member of the American Thoracic Society - Clinical Problems Planning Committee. Dr Egan is a member of The British Thoracic Society Committee charged with developing guidelines for the diagnosis and management of interstitial Lung disease. He is spokesperson for The Irish Medical Devices Association; Clinical Trials Taskforce and is chairman of The Irish Transplant Society. Formerly he was the chairman of The European Respiratory Society Transplantation Committee.

My name is Patricia Elliott and I live in a place called Sandyford Co. Dublin Ireland. I am 48 years old and was diagnosed with LAM 4 years ago. My symptoms were a collapsed lung, which was very painful. I had a Biopsy done and then diagnosed with LAM. I was devastated at the beginning but I had to keep strong for my son and my Husband. My Husband's name is Richard, and my Son Graham. I don't work, but before I was diagnosed with LAM I had just finished a computer course and had the intention of getting part-time work or to work from home, but that never came about. Unfortunately, we do not have a support group here in Ireland for LAM, I am a member of the support group in England.

My Personal experience with LAM is that it has changed my life forever, you don't know what's around the corner, I don't take things for granted any more, like the little things like making beds, hovering, walking up a stairs. I have homehelp in once a week to help with making beds and things. LAM has changed my life, but I am not going to let it take control of my life. I try to think positively, sometimes it is not easy I have good and bad days. I thank god I am off the oxygen, but I never rule out the fact that one day I might be back on it and I may need a lung transplant. My motto is enjoy life.

I am 52 years of age, and have been married to Patricia for the Past 20 years, we have one son Graham, who is 15 years old.

We live in Sandyford Dublin 16 which is approximately 10kms south of Dublin city centre, I work as an accounts manager in a shipping company in the dock region of Dublin city.

Four years ago my wife Patricia was complaining of respiratory problems and was admitted to hospital where they discovered that she had a collapsed lung and she underwent a biopsy where they diagnosed her with LAM. At first we were devastated by the news but we decided to put this behind us and to get on with our lives as best we could, taking each day as it comes.

We get great support from Patricia's doctor in St Vincent's Hospital Co. Dublin. She has been getting on fine since she was taken off the oxygen.

I have been working as a TV director/producer for over 10 years. Most of my shows feature science and medicine. I have spent most of my life living in Tokyo, but have spent a couple of years growing up in Seattle, Washington, USA. Currently, I live south of Tokyo, Japan in a sleepy town called Hayama which overlooks Sagami-bay and Mt.Fuji.

I found out about my LAM 2 years ago, after being hospitalized in Japan and also in the US for numerous pnuemothoraces. Just like most patients in the world, I was told that I only have 10 years to live and that getting pregnant would risk my life. I cannot express how shocked and devastated I was, but with the support of my family, understanding partner, wonderful friends, and passionate doctors, I realized that I needed to take action rather than let the time pass by. I am back in graduate school majoring in health management now, focusing on uncovering the issues and finding ways to renovate the medical system in Japan.

As a staff member of J-LAM (Japan LAM patients group) I am helping to provide patient support and increase awareness of LAM within the government. We produce newsletters quarterly, and hold a couple of seminar events. We have our own logo and website where patients can interact and exchange information online. We know of nearly 200 women with LAM in Japan.

Ian Eslick is a PhD candidate at the Media Laboratory of the Massachusetts Institute of Technology. His current research areas encompass Human-Computer Interfaces, Artificial and Collective Intelligence, Visualization and Software Engineering. Ian is developing technology platforms to enable user communities to collaborate in the acquisition and analysis of complex datasets without requiring significant expertise with computers.

Prior to his doctorate program at MIT, Ian was the founding President of Silicon Spice, a telecommunications semiconductor startup incorporated in 1996. His company was acquired by Broadcom Corporation in 2000 where he continued as a Director of Software Engineering. Under the Broadcom label, the company's products became the market leader in carrier-class voice telephony with significant penetration in the US, Europe and Asia.

Ian is also an advisor to venture capital and startup companies in the semiconductor, software, and non-profit sectors. He holds over a dozen patents in semiconductor architecture, real-time software, and systems technology.

I was diagnosed with LAM in 1989 following 10 months of "asthma," which was in fact a gradually worsening pleural effusion. I was drained twice that year, then started progesterone injections and thankfully the chyle has never returned. My breathing has declined gradually over the years so I've had to slow down quite a bit. In early 2003 I started to use oxygen at night and when walking or cycling, but I was still able to lead a normal life. Then in 2006 my immune system, which had served me very well during 17 years of LAM, seemed to give up and I started developing one chest infection after another. This has led to significantly increased oxygen use and the need to slow down even more. I have been assessed for transplant but am not eligible due to high levels of antibodies in my blood.

My weekdays are filled by work, both paid and voluntary, and during weekends I enjoy relaxing with Terry and Helen. I also remember and grieve for our son Thomas, who died in March 2004, aged 18. For 20 years Thomas, who was born with severe disabilities, was THE big issue in my life-LAM was always a secondary concern. That balance is slowly starting to change as I become more and more disabled myself. Like it or not, I'm forced to take account of LAM on a daily basis. I try to emulate Thomas's cheerfulness and sense of humour, but it isn't always easy. Being involved with LAM Action, the LAM Foundation and (in a small way) with FLAM is a great help, as it's good to be doing something to raise awareness and combat this cruel disease. I look forward to working with LAM Treatment Alliance as well.

I am the founder and Executive Director of the LAM Treatment Alliance. I was diagnosed with LAM in April of 2005, and mobilizing tremendous resources in my midst, founded the LAM Treatment Alliance with the goal of fast tracking research to find a treatment for LAM. We have raised over $1.8M dedicated to fast-tracking treatment research over the past 18 months and primarily serve as a convener of clinicians, researchers and patients for problem-solving encounters and funder of high-impact treatment research. At least 15 strategically targeted research projects are now underway. We have hosted four International problem-solving Summits to date and over 85 ad hoc researcher meetings. With Harvard Medical School and the TS Alliance, we host monthly sceince meetings attended by 35-80 clincian-researchers per session. It is an honor to take part in this work. I am trained as a social scientist focused on the study of law, medicine and society. I received my BA in political science from U.C. Berkeley and my PhD from Harvard University. I have completed a Fellowship in Medical Ethics at Harvard Medical School and I am currently an Instructor in the Department of Social Medicine. I live in Cambridge, MA with my husband, Michael Nurok, our sweet daughter, Charlotte, and our dog, Ray.

Maryam Fathi is a senior adviser at the Department of Respiratory Medicine and Allergy clinics at Karolinska University Hospital in Stockholm, Sweden.

She studied Medicine at Karolinska Institutet, Stockholm and received her MD in 1991. In 1997, she obtained a specialty degree in internal medicine, followed two years later by a degree in Pulmonology. In 2003, She received her degree in Rheumatology. Her main clinical research interest lies in interstitial lung diseases, with a specific focus on pulmonary manifestation of connective tissue diseases and orphan diseases. She obtained her PhD in 2006 with the thesis entitled " Interstitial lung diseases in polymyositis and dermatomyositis".

My name is Guy Fesherman and I have been married to Shirly for two and a half years. I am 32 and work in building and development. I also work with Shirly's father. I heard about LAM for the first time from Shirly, after knowing her for six months. In the beginning I was a bit worried and I did not know how to accept this illness. I asked a lot of questions. But Shirly would always reassure me and explain that there are people with well-known, common diseases like high blood pressure or cholesterol, who suffer more from their condition and are affected by their illness more than she is. They have to take medications and deal with their illness every day. Shirly, fortunately, does not have any limitations. She always seemed to me so full of life, happy, active, and would always go out, have fun, and work like anyone else. So I realised that her LAM is not too terrible. Nonetheless, I try with and for her to eat a healthy diet, to go with her to any lecture or meeting on LAM and to be with and for her.

Her loving husband Guy

My name is Michelle Gonsalves, 58, I am French and I live in Tours (France). I used to be an English teacher but I had to stop working because of LAM in 1999. I have two children (twins, a boy and a girl) aged 28 and a granddaughter who is 5. My first LAM symptom appeared in 1984 with a big angiomyolipoma on my right kidney which led to a nephrectmomy. From that time I deteriorated steadily until I had a single lung transplant in August 2002 after waiting two and a half years. My transplant has been a success so far and my life is nearly normal now.

Having LAM has changed my life completely. All of a sudden I was not working anymore and I really loved teaching. I found myself with basically nothing to do and it was a severe blow. I felt terribly isolated with a strange disease nobody had ever heard of, on oxygen 24 hours a day and awaiting a lung transplant.

So I tried to get in touch with other LAM patients. Eventually a few French doctors helped me to contact some women with LAM here and the Internet enabled me to contact patients abroad. Talking to other LAM patients comforted me tremendously, so I decided to launch a LAM patient group in France. A few relatives and friends helped me and we had our very first meeting in August 2001; only 6 patients were there and today 105 patients have joined FLAM. Our aim is to bring the patients together, to raise awareness of the disease and to have close links with doctors for a better management of LAM. But our ultimate aim is of course to find an effective treatment. LAM being so rare, doctors, scientists and patient associations need to work together on a global basis: that's why I am involved with LAM patient groups abroad and also with the World LAM Patient Coalition (WLPC) and the LAM Treatment Alliance.

OUR MAIN RESEARCH INTERESTS: 1) Development of new pharmacological strategies for the treatment of neurodegenerative disorders with emphasis on motor neuron disease and spinal cord injury; 2)Tissue repair by stem cell transplantation; 3)Tuberose sclerosis complex; 4) Linphangioleyomyomatosis; 5) Role of growth factors and focal adhesion kinases in lung tumors.

We have recently reported the novel finding that the in vitro growth of smooth muscle cells purified from the renal angiomyolipoma of a TSC2 patient depends on the availability of EGF in the medium and functionality of EGR receptor1. Both blood and angiomyolipoma showed a somatic TSC2 gene mutation on exon 18 consisting of a stop codon. The same gene modification was also present in the isolated smooth muscle cells. To the best of our knowledge, only one previous study has shown that angiomyolipoma cells with TSC2 mutations can be grown in culture, although the number of such studies may have been limited by the loss of the entire primary culture. The sub-cloned TSC2-/- smooth muscle cells (A+) are LOH and do not express tuberin. Antibodies to EGF and IGF-1 receptors led to the progressive loss of A+ cells, when added to the culture medium either in presence or absence of EGF. The activity of A+ cell EGF receptors is therefore apparently involved in both proliferation and (perhaps) survival. The simple omission of EGF from the culture medium does not cause cell loss, possibly because of the presence of serum and the autocrine release of IGF-1 by A+ cells. The presence of anti-IGF-IR in the culture medium triggers a dramatic increase in IGF-I release, suggesting a clear feed back control of the process where the activity of IGF-I auto-receptors regulates the secretion of the hormone itself. Endonasal application of these cells in immune-depressed mice allows their penetration in lungs, where they proliferate and cause a cystic destruction of the parenchyma. Anti-EGFR kills A+ cells and promotes restoration of normal parencgyma.

Bronwyn Gray's daughter Lisa, a 29 year old lawyer was diagnosed with LAM in 1997; Bronwyn left her teaching job and established the NZ LAM Charitable Trust in 1998, after a worldwide desperate search for information and clinical support. Ten years on Lisa still works as a Family Law Barrister, her lung function continues to steadily decline however she is incredibly hopeful and supportive of the work of the LAM Treatment Alliance and the LAM Foundation of America.

The Prime Minister of New Zealand, the Rt Hon Helen Clark has been Patron of the New Zealand LAM Trust since its inception; the organisation has a board of trustees and a medical and scientific advisory board. The Trust has raised and funded approximately $400,000 for basic research and has hosted 2 international LAM science symposia which were held in Auckland in 2002 and 2004. Bronwyn also convened the first International LAM science symposium held in Sydney, Australia in 2006.

Bronwyn is the New Zealand representative on the US LAM Foundation's Worldwide LAM Patient Coalition and is involved in ongoing patient support and awareness raising in New Zealand and Australia; she is the vice president of LARA ---the LAM Australasia Research Alliance, which has raised funds and set up a LAM Science investigation and collaboration between the Universities of Auckland, Sydney and Pennsylvania; a six-month pilot project currently in progress at the laboratory of Dr Vera Krymskaya in Philadelphia.

Sergio Harari received his medical degree from the University of Milan, Italy in 1985. His clinical training focused on pulmonology, chemotherapy and intensive care, and he held fellowships in both France and the United States in addition to his home country of Italy. He is currently the Director of the Respiratory Unit at Ospedale San Giuseppe in Milan, Italy. His previous appointments include Senior Register in the Department of Chest Disease and Medical Director of the Lung Transplant Program at Niguarda General Hospital in Milan. Since 1990, Dr. Harari has worked in the field of rare lung diseases and specifically LAM.

Caroline Heckman received her undergraduate degree from the University of Chicago before moving on to the University of Texas MD Anderson Cancer Center where she earned her PhD in 1996. From there she went on to Stanford University as a postdoctoral fellow and later as a staff scientist working in the laboratory of Prof. Linda Boxer to elucidate the molecular mechanisms involved in the development of B cell lymphomas and identifying new targets for therapy. Subsequently she joined the University of Helsinki as a senior researcher with Prof. Kari Alitalo where she has focused on identifying novel mediators of lymphatic metastasis and evaluating current therapeutic options for metastatic disease. Recent research efforts have focused on lymphangioleiomyomatosis and its association with the lymphatic system. Using LAM patient samples she is currently exploring new possibilities for LAM treatment.

My athletic career as a world class 400 meter hurdle runner ended because of problems with lungs. The left lung collapsed 1986 and the right lung 1988 while preparing for the Olympics in Söul. My best achievements were seventh in Los Angeles Olympics 1984 and fifth in the World Championships in Rome 1987. In Rome I made my personal best in the 400m hurdles 54.62s, which also was the Finnish record and still is.

In 1990 I had to quit running because my lungs were not breathing well enough for such a hard race as 400 m hurdles. In a few years I had to quit all running, and I got my LAM diagnosis in 1992. My condition worsened year by year until I was put in a waiting list for a lung transplant in 1999. The operation was done one and half years later in fall 2000. For me it was like getting not just some extra time but a whole new life!

When I got my LAM diagnosis, it was an answer for many questions that had been bothering me in the back of my mind for quite a long time since the first lung collapse. It was a big schock and the need for information was huge, but nobody seemed to know anything about it. I studied all the articles on LAM in the international medical publications in the internet, and the information I got was not very comforting: I would die in 9-10 years unless I got a lung transplant. Still, the possibility of getting the transplant became a "mental saving boat" for me.

LAM made me first bitter and I kept asking Why me? Why me, who had never been smoking but just living healthy, exercising and taking good care of my body? I thought that if I can't run, I don't want to "just" walk, and I didn't want to exercise at all. But after some time I realised, that I'd better enjoy everything I still could, and walking on my own feet is quite marvellous. Little things in life became important and enjoyable. So you could say, that LAM made me enjoy even more of life. Now that I have had a succesfull lung transplant operation I really enjoy it. And I even got my running back!

Simon Johnson is Reader in Respiratory Medicine at the University of Nottingham, UK. His clinical interests are interstitial and rare lung diseases. His research group work in airway smooth muscle / extra-cellular matrix interactions, airway matrix metalloproteinases, molecular and clinical aspects of LAM including clinical trials. He is co-chair of the European Respiratory Society LAM Task Force, member of the Tuberous Sclerosis Association Advisory Board and the LAM Foundation Basic Science Board.

My name is Jan Johnson, I run the UK LAM database and am Coordinator for LAM Action, a UK registered charity for patients with LAM and their families and carers. LAM Action was established 10 years ago and has the three aims of patient support, raising awareness of LAM and fundraising for research. My role as Coordinator primarily includes liaising with new patients after diagnosis, providing access to information on LAM for patients and physicians, coordinating fundraising efforts, acknowledging donations and funds received, and most other administrative functions of the charity. I am also responsible for organising an annual LAM patients meeting in Nottingham and for maintaining the UK LAM patient database of approximately 120 patients. My role is an extremely varied one, often hectic and never dull. During my eight year association with the charity I have met many of the UK patients, several of whom now feel like old friends. New challenges appear all of the time and it's been a steep learning curve however I never fail to be inspired by the tenacity and spirit of this amazing group of women.

My mother, Shar Van Winkle of Bellingham, WA, was diagnosed with LAM on Valentine's Day 2002. She was 47 years old. At the time, I was 23 and was working in my first post-college job at a public relations agency in New York City.

My mom is my best friend, and it was absolutely devastating news. My younger sister, Jenn, and I always thought our mom would be there at important milestones in our lives, such as our weddings, and when we have our own children. But her diagnosis gave us a new, frightening perspective.

In 2003, I moved back to Washington State to be closer to my mom and became very involved in PR to raise awareness as well as fundraising for LAM research. It was the only way I knew how to deal with her diagnosis.

Over the last 6 years, my mom's health has steadily declined -- but she has a fighting spirit, and doesn't let LAM stop her from doing most of the things she wants to do. Her physicians are astonished at how much she still accomplishes, confirming (to me) that your attitude really can affect your health.

I currently live in Seattle and am a marketing consultant in the health care industry. I'm grateful that this past summer my mom was able to be there at my wedding. With optimism, prayer, and continued research, I hold hope that she'll be there for many joyous occasions to come.

Jacques Lacronique was born in Paris, France in May 1947. He studied medicine at Paris University. He specialised in pulmonary medicine and pathology. He spent 2 years at the NIH (1981-1983) as a research fellow in the pulmonary branch (NHLBI) with RG Crystal. He worked on GR receptors and corticosensitivity in IPF (ARRD.1984;130:450-6.). Back in Paris he practiced pulmonary medicine in Cochin University Hospital as a praticien hospitalier. He published clinical research papers on sarcoidosis (ARRD 1989 ;139:1474-8), HX (Thorax, 1982 ;37:104-9), glucocorticoid therapy (ERJ,1991 ; 4: 807-12) and other fields. He has been interested in LAM for many years and published several papers (Chest 1992 ;102: 472-6. Medicine 1999; 78: 321-37. Resp Med, 2004; 98: 536-41.) taking care of patients, collaborating with Germop in Lyon and advising the French LAM patient association FLAM.

My name is Gonzalo Lainez and I am Nuria's husband. I studied Economics and afterwards decided to change careers and study viticulture and oenology along with my wife. I am currently working as an Export Manager for Bodegas Roda (Rioja) and I love selling wine and meeting people from all over the world.

Now we are facing a tougher challenge, it is saving the life of women affected by LAM and we will not stop until we get it. Onwards!!

Romain Lazor is a specialist in respiratory medicine with both clinical and scientific activities focused on rare pulmonary diseases, including LAM. He is working at both the Reference Center for Orphan Lung Diseases in Lyon (France), and the Respiratory Department of the Bern University Hospital (Switzerland). He created and is leading the Swiss Group for Interstitial and Orphan Lung Diseases (SIOLD), as well as the Swiss national registry for rare pulmonary disorders. He is also a member of the core panel of the ERS LAM Taskforce, the scientific committee of the French LAM patient association (FLAM), and the French network of respiratory physicians working on orphan lung diseases (GERMOP).

Sherry Marts directs scientific programs at the Society for Women's Health Research, including the Society's conference series on sex-based biology, the "Some Things Only a Woman Can Do" public education campaign on clinical trials, conferences on Sex and Gene Expression (SAGE), and the Isis Fund for Women's Health Research. She serves as scientific spokesperson for the Society.

Prior to joining the Society as scientific director in 1998, Marts was a senior analyst at the consulting firm of Abt Associates, where she served as scientific research administrator for the HIV Network for Prevention Trials, under a contract with the National Institute of Allergy and Infectious Diseases. From 1991-1996, she was director of research grants at the American Health Assistance Foundation. From 1988-1991, she worked in the office of the vice president for research and development at the American Red Cross biomedical research laboratories in Rockville, Md., where she managed the Red Cross intramural research grants program and administered the Red Cross research ethics review and training programs. She later returned to the Red Cross as a consultant in research ethics and regulatory affairs.

Marts received a bachelor's of science in applied biology from The Hatfield Polytechnic (now Hertfordshire University, UK) in 1981 and her doctorate in cell and molecular biology from Duke University in 1986. She completed a postdoctoral fellowship at the Lineberger Cancer Research Center at the University of North Carolina at Chapel Hill in 1988.

Sebastiano and myself are around 30 years old, we met while we were both living in New York, and are now living together in London, both working in finance. Until few months ago, our main concerns were our careers and raising house prices in London. Then, in April 2007, after a pneumothorax and a CT scan, I was diagnosed with LAM. The situation is relatively ok at the moment, but I likely have had LAM already back in 2000 when an angyomiolipoma was removed from my right kidney. Since April my life has changed; completely and forever. Practically, limitations are few so far: another pneumothorax, a pleurodesis, uncertainties about any future flights, etc. But emotionally things cannot be the same. I have got involved with LAM Action; and this means that I try to fight an internal struggle by getting involved into something that makes me worry about my future while at the same time representing my only chance of a better future. I am re-assessing my work/life balance and think about a family. I talk more to my parents. I kiss Sebastiano more often. And at night, when sometimes I feel a bit like crying, I remember that I have all I need, and more.

My name is Eleonora, I am 30 years old and I come from Catania (Italy). I was a student when I was diagnosed with LAM in 2001 following a chylothorax. After 2 month of hospitalization and the feeling of being totally alone with my rare disease, I felt the need to share this experience with other lammies and fight against LAM. Since then, I started the hard work in building a community, a group with the goals of getting the Italian public and doctors more informed about LAM, giving information and support to those women affected by LAM, as well as to support research, so I've founded A.I.LAM - ONLUS in 2003. I graduated in Political Sciences with a major in health economics at Catania University, and had my MSc in "Economics and Management of Health Care Enterprises". I hold a position as Ph.D. student in Public Economics at the University of Catania.

Joel Moss, M.D., Ph.D., is Chief of the Pulmonary-Critical Care Medicine Branch, National Heart, Lung, and Blood Institute (NHLBI), National Institutes of Health (NIH), Bethesda, Maryland. He graduated from Brandeis University (1967), summa cum laude, and received M.D.- Ph.D. (Biochemistry) degrees from New York University School of Medicine (1972). Following internship and residency (medicine; Johns Hopkins), he completed post-doctoral and pulmonary fellowships (NHLBI). At the NHLBI since 1974, he has co-authored over 500 scientific papers, edited/co-authored several books, and is a co-inventor of biotechnology patents. Dr. Moss was a member of the NHLBI Institutional Review Board from 1988-2006, and Chair from 1995-2006. Subjects of his research include lymphangioleiomyomatosis (LAM), with emphasis on roles of the LAM cell and susceptibility/modifier genes on disease progression.

My name is Anke Müller and I am 37 years old. My husband, Lutz, and I just got married and we live in a small town in the south-west of Germany

I work as a financial analyst in an IT-consulting firm. I like my work and my colleagues but sometimes I wish work would leave me more energy for my LAM activities. I work for the LAM Treatment Alliance, helping with organising meetings, IT work, letter writing and so on. I am also a member of D-LAM, the German LAM self-help group.

I was diagnosed eight years ago and have had a rather slow decline of lung function over the past 12 years. The decline is slow, but it is still a decline and although it is not as terrifying as a fast decline, it rules my life. The list of activities I cannot do anymore is getting longer and longer every year.

The major problem of my disease management are still the pneumothoraces that I have had for 12 years. It is getting more and more difficult to fix my lungs. I cannot really say that I learned to live with this kind of uncertainty in my life. I know it can happen anytime. But when it happens and I need to be hospitalized immediately, I am always stunned.

Regardless of what is rational or not, I do what I still can. This year I started to play the recorder and to sing in a choir. Friends asked me whether it wouldn't be more sensible to play a non-wind instrument. But I try to make as little "sensible" decisions as possible within my operating range. What I really want to do comes first!

My personal health problems and the stories of friends who have LAM motivate my commitment to the LAM Treatment Alliance. I believe in Amy and Havi and all the others who work to fast-track a research program that a treatment will be found in time for all of us.

My name is Nuria and I suffer Tuberous Sclerosis since I was a child. 5 years ago I started to feel tired and disnea and just recently I was diagnosed LAM. In October 07, I suffered Chylotorax, but now I feel almost recovered and fight with the help of my husband and family against my illness. I am member of AELAM since September 07, where I feel the support of other LAM affected women who share with me their experiences. That is of great help. I studied Economics and work as CFO for an Italian company. I love to talk about wine (and drink it, also) with my husband, Gonzalo.

Now we are facing together the challenge to make LAM known in order to get a solution for women affected by LAM and we will not stop until we get it. Onwards!!!

Tommaso Nicolosi was born in Catania (Italy) June, 13 1964. He graduated, summa cum laude, at Catania University Medical School in 1989, discussing on "Solitary pulmonary nodule: diagnostic and clinical controversies". Early as a student he showed special interest in general thoracic surgery and in 1989 he started his surgical residency program. During his residency he spent one year as visiting clinician in General Thoracic Surgery at the Mayo Clinic, Rochester MN, USA. He was overseas fellow at The Royal Brompton Hospital London, UK (1997) and Locum Registrar at The Royal Victoria Hospital Belfast, UK (1998). He practices General Thoracic Surgery at Cannizzaro Emergency Hospital in Catania, Italy. He has a specific interest in lung surgery, chest wall reconstruction and LAM.

I am a 3rd year medical student at Karolinska Institutet in Sweden. I first heard of LAM when an acquaintance of mine, Amy Farber, was diagnosed with the disease in 2005. When in the spring of 2007 the LAM Treatment Alliance was organizing a research summit at my university in Stockholm, some friends and I helped out with the preparation for the meeting and during the meeting. In the last month I have been doing a couple of research based projects with the LTA in Boston. The goal has been to consolidate what is known about the disease and make this knowledge accessible to researchers and clinicians.

Michael Nurok, MD, PhD is a founding member of the LAM Treatment Alliance. He lives in Cambridge, Massachusetts with his wife, LAM Treatment Alliance Executive Director Amy Farber, and daughter Charlotte. Dr. Nurok is a practicing Critical Care physician and Cardio-thoracic anesthesiologist as well as faculty member of the Center for Bioethics at Brigham and Women's Hospital, Harvard Medical School in Boston. He is an active member of the Partners Healthcare (Brigham and Womens Hospital and Massachusetts General Hospital) Institutional Review Board charged with ensuring that research meets the highest ethical standards and is conducted in compliance with federal, state, and local laws and regulations.

My name is Berit Öberg and I'm from Stockholm, Sweden. I have no personal experience of LAM myself, but I have a daughter, Lisa 24 years old, with Tuberous Sclerosis Complex (TSC). Many women with TSC develop LAM (and AML on the kidneys). I founded the Swedish TSC-association about 20 years ago. Being the Swedish TSC-association's international representative, being Lisa's mother and being a friend to some women with TSC and LAM -certainly I'm interested in the involvement with LAM organisations.

My name is Samir Okasha, I am 36 and I am married to Havi, who has LAM. I am a Professor of Philosophy at the University of Bristol. I work on philosophy of biology, and more generally on philosophy of science.

I am MªLuz Vila, president of AELAM, LAM Spanish Association. I studied Business Management and Administration for three years. I am married and I have two children.

I was diagnosed in 2005 after losing my left kidney, because of an angiomyolipoma in 1990, and several pneumothoraxes. I can say that I am lucky, since my pulmonary function is almost normal. But since I know that I have LAM I feel that there is an early date of expiry fixed for me and due to that it's hard for me to make future plans.

Our organization was founded in 2002 by Asuncion Valdivielso, also affected who after being transplanted both lungs in 2005 decided to enjoy her family and to leave her position in the association.

AELAM gives information and support to those women affected with LAM in Spain and Latin America. We hold an annual meeting in Madrid where a team of pneumologists, led by Dr. Alvaro Casanova, who explains to us the latest news about the disease and to resolve our doubts.

We still have much to do, as joining all Spanish LAM affected together, so that we can have a better understanding of the disease. This would make the study of the cases easier and the different ways in which it develops. Also, so the beginning of future clinical trials in our country would be more feasible.

I am Viera Reptova, 57 years old. I come originally from Slovakia. Since 1992 I live in Austria near Vienna. LAM has changed radically my former very active life - both professional and private one. I was diagnosed in 2001, after AML operation and I tried hard to continue with my work but since the summer of 2002 I had to retire. I had worked in the field of physiotherapy both as a physiotherapist and lecturer. In 1993 I graduated and was awarded the MA degree. Due to the two operations, I had to resign to my doctoral study, which I already started.

I have also got information about LAM from the LAM Foundation website and then I contacted FLAM because my French was better then English. I attended the LAM Germany meeting on March 2003 as well as the subsequent meetings of LAM - De, being a member of German association. I attended on Eurolam in Paris which was perfectly organized by FLAM in October 2003. The Eurolam has motivated me to establish a LAM group in Austria.

Thenceforward I'm trying to find more LAM patients in Austria and finally in July 2006 together with two other LAMmies we established a self-help group LAM Austria. We focus our activity on building our group and we aspire to get Austrian public and doctors more informed about the LAM as well as to support research.

Thanks to very good contact with Michelle Gonsalves and Susanne Geilng I have learned how important the international cooperation among LAMmies is. Since my participation in the LAM Treatment Alliance's Global LAM Summit in Stockholm, Sweden in February 2007, I' m motivated to improve my English (after not practicing the language twenty years). Last June I took English course in England and I plan to repeat it again in January 2008 after the LTA Summit in Oxford.

David Rodman, M.D graduated from Haverford College, in 1976 with a B.A. in Economics. He received his MD from the University of Pennsylvania for Medical School in 1980. After medical school, he relocated to the University of Colorado for Internal Medicine residency and Pulmonary and Critical Care fellowship training. In 1988 he joined the faculties of the University of Colorado and the National Jewish Medical and Research Center with primary appointment in the Department of Medicine and secondary appointment in Physiology and Biophysics, rising to the rank of full Professor with tenure in 1998. During his time at Colorado David was named an Established Investigator and Fellow of the American Heart Association, outstanding young investigator of the Western Society for Clinical Investigation, elected to the American Society for Clinical Investigation and named to both America's Top Doctors and Best Doctors in America for five consecutive years.

David's basic and clinical focus has been on genetic lung diseases, including cystic fibrosis, alpha-1 antitrypsin deficiency, lymphangeoleiomyomatosis and hereditary pulmonary artery hypertension. During his academic career David was active in clinical care and early phase clinical trials in cystic fibrosis, and was involved in several large scale trials in pulmonary fibrosis. He was a founding member of the Cystic Fibrosis Therapeutic Development Network, playing a leadership role in establishing this groundbreaking Phase I/II trials network for inherited lung diseases. He has authored approximately 100 scientific papers and was chair of several consensus conferences setting guidelines for clinical care for patients with cystic fibrosis as well as research goals for the National Heart Lung and Blood Institute.

In July 2005 David joined the Novartis Institutes for Biomedical Research as Global Head Translational Medicine, Respiratory based in Horsham, England. In this role, David has primary responsibility for integrating the respiratory research pipeline with biomarker development and proof of concept studies in pre-clinical animal models and first-in-man studies.

Meredith joined the LAM Treatment Alliance staff in October 2007, and has been busy working on preparations for the Oxford Summit. Meredith has a law degree from the New England School of Law in Boston, and has previously worked in education, healthcare advocacy, and domestic violence law. Meredith is looking forward to meeting all the wonderful people in Oxford that she has been communicating with over email these past months.

My Name is Flávia Patitucci Sobroza, I am a 43 year old Brazilian woman and have a 13 year-old daughter named Úrsula. I was diagnosed with LAM in 1994 during my pregnancy but I am sure that LAM started its symptoms at least 5 years prior my pregnancy.

Back then 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.

As we didn't have much information about LAM in 2002 I started to try and find more on the Internet and finding The LAM Foundation changed my life. I received lots of information about the disease. I have attended the LF yearly conference since 2003 and in all these years I learned enough about LAM to share all this information with other Brazilian 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 Ribeiro, 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 54 LAM Patients registered in the LAMBRA and Hospital das Clinicas database.

I am very confident that we will find a treatment for LAM shortly. Especially by seeing that most organizations around the world are closer and working together.

My name is Solange Patitucci Sobroza and I am a mother of a LAM patient Flávia Patitucci Sobroza. What can I say about dealing with the frustration, despair and fear about the possibility of loosing my daughter to the LAM disease? I've been dealing with that for 13 years now and hope that God can give me enough energy to stay with her and help her many more years. I was so happy that about two years ago she decided move in to my house with my granddaughter Úrsula because living together I can take more care of her when she gets sick or when she needs help with house work. Sometimes I watch her working on her computer and I feel very proud about what she is doing to help other Brazilian's patient by keeping ALAMBRA's organization always available for them. I travel with her because it is very difficult for her travel alone with the oxygen and baggage, you know, all the stuff we need to travel. It's a pleasure for me to accompany her on trips because I can see the work of so many people and so many organizations to find a cure for LAM. Although I don't speak English very well I can tell all the effort that is made to have more research done or more information available. All I can ask for now is that a treatment, or even a cure, be near enough for us stay together and never think about LAM anymore

My name is Susanne and I live near Frankfurt am Main, Germany. I am 48 years old and work as an administrative manager in a municipal office.

After multiple pneumothoraces in 1992 I was diagnosed with LAM in summer of 1993. Fortunately, my illness has been relatively stable. LAM has changed my life by making me more aware of its value; not every day, but I am still working on it. Through LAM and the foundation I have met some of the most inspiring people and good friends.

Since 2003 I have been participating in the yearly meetings of the German LAM Organization "LAM Selbsthilfe Deutschland e.V.", which was founded by Susanne Geiling, who is also the LAMbassador of the WLPC. I am the representative of the first local LAM self-help group in the Rhein-Main area. In 2006 I joined the German LAM Organizing Committee and in 2007 I was elected to the LAM board. It makes me very proud to work for the foundation and for LAM Patients. Today 130 patients are members of the German self-help group. Our aim is to bring the patients together, to help the search for a treatment, to construct a nationwide network based on local self-help groups and to raise awareness of the disease. Of course our main aim is to find a treatment for LAM in the near future. We have no time to wait.

I retired two years ago from the foundation chair of respiratory medicine in Nottingham but am continuing research into LAM. My background is in respiratory pharmacology and clinical research including clinical trials. These were mainly in asthma but more recently in LAM. I helped set up the patient group, LAM Action, which helps to support patients via a web-site, newsletter and annual meetings in Nottingham. We have a register of all patients known to have LAM in the UK and those who have expressed an interest in participating in research. I am involved in the UK study of sirolimus for patients with LAM and TSC, which has now finished recruiting. I am on the Respiratory and Allergy group for the Committee on Human Medicine (previously CSM) and have experience of regulatory authorities and of grant giving bodies such as the MRC.

Jeff Thomas is the Director of Donor Services at NDRI (the National Disease Research Interchange) in Philadelphia, USA. He has over 20 years experience in the field of tissue donation as he previously served as the Director of Tissue and Organ Preservation Services at Gift of Life Donor Program in Philadelphia (one of the largest US organ procurement programs), as well as the Executive Director of Doheny Eye & Transplant Tissue Bank in Los Angeles. He holds certification from the American Association of Tissue Banks and received his science degree for Neumann College. He joined NDRI in 2005. His department oversees the 125 centers in NDRI's Tissue Acquisition Network and the NDRI Private Donor Program which consents individuals interested in being a registered tissue donor for research purposes.

Henrik Watz was born in 1971 and finished Medical School in 1998. I have started my medical career in field of Radiology at the University Hospital of Giessen, Germany, where I became familiar with (HR-)CT-diagnosis of lung diseases and got in touch with LAM for the first time. My initial research focus was on micro-CT technique and its application in imaging human alveoli. Afterwards I worked as an Intern in Respiratory Medicine and General Medicine for 4 years at the University Hospital of Frankfurt. Currently, I am working as a physician and project manager at the Pulmonary Research Institute at Hospital Grosshansdorf, which is located near Hamburg in the north of Germany.

Postgraduate Training: Post Doctoral, Oncology, Johns Hopkins Kimmel Cancer Center, Baltimore, MD

Vicky Holets Whittemore, Ph.D., is Vice President and Chief Scientific Officer at the Tuberous Sclerosis Alliance in Silver Spring, MD. Her nephew was diagnosed with Tuberous Sclerosis Complex (TSC) in 1985. Vicky and her son were diagnosed with TSC in 1990. Vicky received a B.S. in Zoology from Iowa State University in 1977 and a Ph.D. in Anatomy from the University of Minnesota in 1982. She did postdoctoral fellowships at the University of California, Irvine and the Karolinska Institute in Stockholm, and was on the faculty of University of Miami School of Medicine from 1986-1993. She served on the Board of Directors of the TS Alliance from 1987-1993, and joined the staff of the Tuberous Sclerosis Alliance in 1994 where she has worked to build the interest and support of TSC research. She is the co-editor of the third edition of Tuberous Sclerosis Complex, and is currently co-editing the fourth edition with two of her colleagues. She has authored more than 30 scientific publications. She serves on the Review Committee for the Collaboration, Education, Translational Testing (CETT) Program for the Office of Rare Diseases at the National Institutes of Health, and serves as the Vice-Chair of the Board of Directors of the National Coalition for Health Care Professional Education in Genetics (NCHPEG), and as a member of the National Advisory Council of the National Institute of Neurological Disorders and Stroke, National Institute of Health.

Dr. Kai-Feng Xu, an associate professor in the Department of Pulmonary Medicine, Peking Union Medical College, Beijing, China. He received his first degree from Shanghai Medical University in 1988; the master degree from University of Melbourne in Australia in 1997; and doctorate degree from Peking Union Medical College in 2002. Since 1987, he has been working in Peking Union Medical College hospital, Beijing, China, as an intern, resident, attending physician and associate professor. From 2002 to 2005, he worked in Dr Joel Moss' Lab in National Heart, Lung and Blood Institute, National Institutes of Health in USA. He participated 10th Anniversary LAM conference in Cincinnati in 2005. LAM China website (http://www.lamchina.net) was open in 2006 for patient education and registration. He edited LAM Handbook for Chinese patients in 2007. Now, Peking Union Medical College Hospital in Beijing is the most important referral center for LAM patients in China.