- Stanford University LAM Support Group. See flyer for information. The plan is to have all the meetings on the first Monday of the even numbered months.
- New LAM Handbook!
 The LAM Foundation is proud to announce the first-ever LAM Handbook for patients and their families! The 148-page Handbook includes chapters on the basics of LAM, oxygen therapy, understanding pulmonary function tests, management of lung collapses and kidney tumors, lung transplantation, and the rapamycin treatment trial. Also included is information about the LAM protocol at the National Institutes of Health, eligibility requirements for Social Security benefits, and helpful discussion on coping with your illness.
We believe this Handbook will be invaluable, but please note that it is intended solely as a resource; it is not a substitute for supervised medical care. The LAM Handbook is made available to all LAM patients for a $10 donation and additional books may be purchased for family members, friends, or doctors at $15 each. An order may be placed by sending a check to the Foundation earmarked for the Handbook or by calling Amie, our Administrative Assistant, at 513-777-6889 to charge by phone. For those based overseas with no US checking account, the easiest way to pay is to go to Donate Online and give a donation.
We hope you find the Handbook helpful! Click here for a pdf version of the handbook.
- A letter from the Director to LAM patients.
- Statement by Sue Byrnes to Congressional Hearing, Subcommittee on Health and Environment, March 26, l998.
- LAM Book:
A book on LAM, edited by Dr. Claude Lenfant and Dr. Joel Moss, published by the National Heart, Lung, and Blood Institute (NHLBI).
- LAM Transplant Book:
| Reveals the Inside Story on Lung Transplantation. |
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| Double-Lung Recipient Writes A Life-Saving Guide for Patients. |
| Author: Karen A. Couture |
Written in a "how-to" format, this book introduces the reader to the complex process of getting on the transplant waiting list and how the list works; preparing for surgery and the surgery itself; financing the operation and the long recovery afterward; and the complications of rejection, infections and the medications. Scattered throughout the book are short, but inspirational stories and quotes from patients who have gone through this before. The book also provides a wealth of information in an extensive resource section; a glossary; and an appendix of all the lung transplant centers in the United States.
Books can be ordered by going to www.trafford.com and doing a search for "The Lung Transplantation Handbook: A Guide for Patients" or by calling 888-232-4444.
- Newsletter
The LAM Foundation publishes a newsletter solely for LAM patients. The "Breath of Hope"newsletter provides LAM patients with an opportunity to share their stories, feelings, poetry, and fund raising ideas. The newsletter allows them to ask questions to each other and to doctors about exercise, diet, treatments, insurance, transplants, flying and any concerns they may have.
- LAM Patient Directory
The LAM Foundation publishes a directory of women who have LAM throughout the United States and other countries as well. This directory includes women who have given written consent to publish their names, addresses, and telephone numbers, and is made available to all interested LAM patients. Women find it satisfying to communicate with other women who have LAM. Through this network, strong, close relationships have developed between LAM patients.
- Personal Journeys with LAM
The LAM Foundation enjoys publishing a booklet called Personal Journeys, solely for LAM patients. It was initiated by LAM patient Emma Murphy. The book is filled with pictures and stories from LAM patients about their families, their interests, their hobbies, and their personal journeys with LAM. The stories are heartwarming and inspirational. They are not only interesting, but we find many uses for them. We want to hear from you! Tell us about your personal journey with LAM. Tell us what you like about The LAM Foundation. How did the Foundation affect your life? We are continually looking for material for our newsletter, inspiration for new LAM patients who contact us, sound bites for legislators, and hope for all. Write to us today with your personal story and/or how the Foundation has impacted your life. Send to lam@one.net. We look forward to hearing from you! Several stories may be accessed from this link -Selected Stories
- NHLBI LAM Patient Protocol
The Pulmonary/Critical Care Medicine Branch of The National Heart, Lung, and Blood Institute (NHLBI) at the National Institutes of Health (NIH) in Bethesda, Maryland, has initiated a study of individuals with Lymphangioleiomyomatosis (LAM). The protocol is a great opportunity for LAM patients to contribute to LAM research and to benefit from the testing and evaluation by expert physicians at the NHLBI. This study is being conducted by Dr. Joel Moss. It is designed to define the pathogenesis of the disease at the cellular and molecular levels. For more information go to LAM Patient Protocol.
Some patients may be eligible to participate in clinical studies at the Warren Grant Magnuson Clinical Center of the National Institutes of Health in Bethesda, Maryland. Participants must meet specific LAM Patient Protocol requirements.
- National Registry for Women with LAM
In order to better understand LAM, the National Institutes of Health has funded a project to create a national Registry of patients with LAM. For more information go to the National Registry for Women with LAM.
- LAM Foundation LISTSERV.
Communicate via e-mail with LAM patients and family of LAM patients.
- A New Vision of Life
Many women with LAM have had to change their life-styles, careers, goals, attitudes, and their approach to life since their diagnosis of LAM and have amazingly maintained a positive outlook. We’ve asked LAM patients to relate their personal experiences when dealing with different facets of this aspect of their lives. Click here to read their inspiring stories.
- Links to National Respiratory Patient Organizations
- Other LAM Web Sites
Italy
Brazil (new address)
France
Japan (new address)
Switzerland
Australia A web forum has been added to this website.
United Kingdom
New Zealand
Germany
Spain
Canada (new organization)
- In memory of those who have touched our lives...
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