The LAM Foundation Information

MISSION To catalyze new treatments—and ultimately a cure—for LAM by advancing research, supporting compassionate care, and amplifying the voice of women with rare diseases. Lymphangioleiomyomatosis (LAM) is a rare and progressive lung disease that primarily affects women and has no known cure. Founded in 1995 as a grassroots effort, The LAM Foundation is the global leader in the fight against LAM. It has evolved into an organization that is described by the National Heart, Lung, and Blood Institute (NHLBI) as “a model for voluntary health agencies.” The LAM Foundation provides 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. In May 2015, the FDA approved Rapamune as the first effective treatment for LAM, based on research and patient engagement supported by The LAM Foundation. In over 30 years, The LAM Foundation has raised nearly $37 million, with more than $19 million directed to research. Thanks to those grants, investigators were able to obtain an estimated $90 million in subsequent funding from other sources to advance the field of LAM research. This research effort has produced significant grant-related publications, a diagnostic biomarker that can obviate the need for lung biopsy, and a pivotal clinical trial that has identified the first treatment. As we look ahead to the next 30 years, we are focused on investing in scientific research that will allow an earlier diagnosis and the identification and FDA approval of new therapies for treatment. We will be working with our clinician partners to improve access to comprehensive patient care and support while creating fund development strategies to ensure the sustainability of our work. We will be moving forward to attain our vision – a future without LAM.