Member Spotlight: The LAM Foundation

By Theo Smith, Associate, Marketing & Communications  

Lymphangioleiomyomatosis, known as LAM for short, is a rare lung disease that is characterized by an abnormal growth of smooth muscle cells in the lungs, lymphatic system, and kidneys. This unregulated growth of cells can lead to loss of lung function, accumulation of lymph–rich fluid in the chest and abdomen, and growth of tumors in the kidneys. There are two forms of LAM, Sporadic LAM (S-LAM) and Tuberous Sclerosis LAM (TSC-LAM).  

LAM is very similar to other lung diseases, and because the symptoms vary for each patient, it can be very difficult to diagnose. However, common symptoms of LAM include shortness of breath, chest pain, chronic cough, fatigue, pneumothorax (lung collapse), angiomyolipoma (benign kidney tumors), and pleural effusion (fluid in the chest cavity). LAM is a rare and progressive lung disease that primarily affects women and has no known cure. However, thanks to organizations like The LAM Foundation, living with the disease today is much different than in years past due to increased research and amazing breakthroughs in effective treatment.  

Founded in 1995, The LAM Foundation is a global leader in the fight against LAM. The Foundation offers support and education for women with LAM and their families, engages doctors and scientists to continue to learn more about the disease and raises funds for continued research.  

The LAM Foundation urgently seeks safe and effective treatments, and ultimately a cure for LAM, through advocacy and the funding of promising research. The Foundation is dedicated to serving the scientific, medical, and patient communities by offering information, resources, and a worldwide network of hope and support. It has been described as “a model for voluntary health agencies” by the National Heart Lung and Blood Institute.   

The LAM Foundation is focused on scientific development including the development of biomarkers to diagnose and predict disease progression, the identification of new drugs as possible treatments, and driving the completion of all related clinical trials. In the next five years, the Foundation is hoping to improve quality of patient care and support, increase global outreach to patients and scientists, and increase fundraising to support the needs of research for a cure.  

Working together, The LAM Foundation and the National Health Council (NHC) create a collaborative environment and put forward consensus public policy solutions that keep the patient central to all we do.  

For more information about The LAM Foundation, visit their website.  

For information on joining the NHC, contact Bob Scott, NHC’s Associate Director, Membership & Operations.