THE HISTORY OF THE LAM FOUNDATION

The LAM Foundation was established by Fran and Sue Byrnes in 1995 to bring hope to patients with Lymphangioleiomyomatosis, or LAM. When their daughter, Andrea, was diagnosed with LAM in 1994, the lack of evidence-based medical advice and scientific research was as frightening to them as the prognosis itself. The Byrneses initiated a letter writing campaign to the National Institutes of Health (NIH) and to pulmonary physicians around the country. Their goal was to organize every LAM patient on earth into a cohesive group focused on medical research. What happened next elevated LAM from an asterisk in the medical literature to a model of progress in rare disease. The National Heart, Lung, and Blood Institute (NHLBI) established a LAM Registry to define the natural history of the disease and initiated a five-year intramural longitudinal research study. The LAM protocol is currently collecting data on over 250 patients with LAM. Since its inception, the Foundation has raised $5 million and has committed nearly 75% of those funds to support forty-eight peer reviewed research projects. LAM Foundation investigators discovered the importance of tuberous sclerosis genes and cellular pathways in the cause of LAM, and initiated a clinical trial based on well-defined molecular targets. Additional funding has been obtained from the Office of Rare Diseases to extend the trial to the national and international stage. In addition to funding scientific research, the Foundation serves to encourage collaboration and to overcome obstacles. When confronted with an impasse in scientific progress due to poor access to LAM tissue samples, a histologist was contracted to fly to the site of every LAM lung transplant in the country. The Foundation convened a Consensus Group on the Management of Pleural Disease in LAM, to reduce the suffering of LAM patients who experience pneumothoraces and chylothoraces and to improve the quality of life for LAM patients. The Foundation has committed to a long-term investment in annual LAM conferences that provide a forum for scientific exchange, improve LAM clinical practices, and support LAM patients around the world. The LAM Foundation strives to be effective at every level required to move the science forward. The pace of progress in LAM attests to the humanity and dedication of the LAM scientific community and the passion that patient/investigator interactions have inspired. The goal of the Foundation is to conquer this disease in a decade. We believe we are on the right track. Believe with us.