The LAM Foundation Story
In 1994, Sue Byrnes' 22-year-old daughter, Andrea, was diagnosed with a rare lung disease called lymphangioleiomyomatosis, better known as LAM. LAM affects almost exclusively women and strikes in the prime of their lives, as they begin their careers and start families. Sue immediately turned to medical literature for information and answers about the mysterious disease that had stricken her daughter and found practically nothing - no studies of LAM, no resources, no support groups and, basically, no hope. And so began her new life mission.
Sue quickly learned that she would need the help of Congress to call attention to LAM. Driven by the love for her daughter, she initiated the Labor of Love campaign. Sue wrote to every known LAM patient and contacted women's organizations, churches, and schools, encompassing over forty states. Approximately 11,000 members of the Ohio Education Association and more than 1,000 doctors joined the campaign, asking their Member of Congress to support a LAM registry.
Sue and her supporters successfully lobbied Congress to convince the National Heart, Lung and Blood Institute (NHLBI) at the National Institutes of Health (NIH) to develop a LAM patient registry, including a tissue bank, that would help physicians and scientists become more knowledgeable about LAM and stimulate research. In addition to a LAM registry of patients, the Foundation encouraged NHLBI to initiate a LAM Protocol, where LAM patients are evaluated every six months at no cost to the patient. The LAM Foundation has formed a model collaboration with the NHLBI, which has invested over $20 million in LAM.
In 1995, less than a year later after Andrea's diagnosis, Sue and her husband, Fran, established The LAM Foundation, now the driving force behind the search for effective treatments, and ultimately a cure, for LAM. The Foundation has also become the education and support network for women affected by LAM, and a trusted resource for health care professionals and scientists.
More than 2,000 women with LAM have been identified as a result of the Foundation's efforts, but scientists now estimate that as many as 250,000 women worldwide may have LAM, but are currently undiagnosed or misdiagnosed with asthma, emphysema or pulmonary bronchitis.
In this short period of time, The LAM Foundation has raised over $15 million and directed the majority to research. These funds have contributed to three major scientific breakthroughs, including the first evidence of a genetic link to LAM, the identification of a LAM gene, a molecular explanation for abnormal smooth muscle cell growth in LAM, and the first-ever LAM treatment trial. The LAM Foundation continues to be actively engaged in identifying potential targets and treatments for LAM. The most promising treatment identified through this work has been studied in a LAM treatment clinical trial, the MILES Trial.