The 2025 LAM Foundation International Lymphangioleiomyomatosis Research Conference - The aim of this R13 application is to request support for a conference entitled “2025 International LAM Research Conference” (2025 LAMposium), sponsored by The LAM Foundation. The LAM Foundation (TLF) is a 501(c)3 non-profit charity whose urgent mission is to seek new treatments and a cure for lymphangioleiomyomatosis (LAM). In 2025, TLF will celebrate 30 years of inspiring hope and innovation for women with LAM. Held annually prior to the COVID 19 pandemic, the LAMposium has been held only once and the 2025 LAMposium will be only the second such conference in over 8 years. The overarching theme of the 2025 LAMposium is “Bridging Legacy and Innovation to Find a Cure.” Traditionally, each LAMposium planning cycle appoints expert scientist(s) as co-chairs to bring new minds and ideas to the table, and the topics and speakers are entirely up to the guest chairs with input from TLF Scientific Director, Dr. Vera Krymskaya (UPenn). The 2025 LAMposium scientific program has been developed by Dr. Elisabeth (Lisa) Henske, Research Conference Co-Chair, and Dr. Simon Johnson, Clinical Conference Co-Chair. To enlist input from the next generation of LAM researchers, Dr. Kaela Varberg, Assistant Professor, Children’s Mercy, Kansas City, has been appointed by the Board of TLF as Chair of the 2025 LAMposium Steering Committee, and Dr. Charilaos (Harry) Filippakis, Associate Professor, University of New England, will Chair the abstract review and poster session. The upcoming LAMposium is scheduled for September 26-28, 2025, in Kansas City, MO—a regional hub renowned for its dedication to rare disease advocacy and research. As is our tradition, LAMposium will bring together LAM patients, clinicians, scientists, and care providers to facilitate critical interchange about LAM clinical treatment, management, research directions, and patient-centered quality of life approaches with the following goals: (1) Celebrate 30 years of achievements by TLF, review and highlight promising new LAM research directions informed by a robust mixed-methods research study, the “LAM Patient Needs Assessment and Research Priorities” (LAM-PREP). LAM-PREP was a two-year process utilizing focus groups and a survey that had an enormous response rate (754 participants) that included LAM patients, clinicians, and researchers. This study was created to inform and guide future TLF investments in advancing LAM research and clinical care to improve LAM patient quality of life and identify areas of potential new treatments for LAM; (2) Introduce new investigators to LAM basic, translational, and clinical research and demonstrate the joys of a career in goal-oriented, disease-focused research; and (3) Present TLF 2026-2030 Strategic Plan. 2025 LAMposium will provide a forum for patients, researchers, and clinicians to rapidly translate any advances that will improve the lives of patients with LAM.
