We are pleased to inform you that the LAM Patient Research Priorities Survey (LAM-PREP), led by Dr. Marina Holz, has been a success. While Dr. Holz and the leadership team at The LAM Foundation continue to analyze the results, we can report on some initial findings.

First of all, we would like to thank the 88 LAM patients and their loved ones who participated in the 5 focus groups during the summer and fall of 2023, and the 754 members of the LAM community – patients, family, and friends, scientists, and physicians who responded to our survey in the spring of 2024.

While finding new treatments and a cure for LAM remains a top priority, other areas of research were highlighted by members of the LAM community, such as the role of hormones in LAM disease and treatment, and what causes the LAM to initiate and progress.

Members of the LAM community noted several quality-of-life concerns, such as mental health and managing supplemental oxygen. Important LAM health needs were also prioritized, such as building awareness of LAM in the medical community, increasing access to comprehensive LAM care, and understanding and interpreting LAM symptoms.

These patient-ranked priorities will help The LAM Foundation’s scientific leadership be more intentional in directing the grant research program toward the most impactful return on investment of precious donor funds. In addition, the landscape of the LAM community’s health needs and research priorities will serve as a basis for the upcoming strategic planning process.  We will count on the participation of our engaged and active LAM community in these important processes.