The History of LAM

Key Milestones

1918 - First case of LAM in a tuberous sclerosis (TSC) patient

1937 - First description of LAM in a patient without tuberous sclerosis

1993 - Discovery of tuberous sclerosis 2 (TSC2) gene

1995 - The LAM Foundation is founded by Sue Byrnes, whose daughter Andrea Byrnes was diagnosed with LAM.

-Sue successfully lobbied Congress to convince the National Heart, Lung and Blood Institute (NHLBI), National Institutes of Health (NIH), to develop a LAM patient registry, including a tissue bank. The patient registry has helped physicians and scientists become more knowledgeable about LAM and stimulated valuable scientific research.

1996 - First LAM Foundation research grant funded

1997 - Discovery of tuberous sclerosis 1 (TSC1) gene

-NHLBI LAM patient registry established

-LAM Foundation holds first annual International LAM Research Conference (LAMposium)

1998 - Investigators identify evidence of TSC gene involvement in LAM

-LAM Foundation funds first scientific publication

1999 - Discovery that TSC2 gene controls cell size in fruit fly eyes

2000 - LAM Foundation Funded Scientists discover that LAM is caused by TSC gene mutation

2001 - TSC proteins linked to regulation of cell-signaling pathway (Akt), important for cell growth

2002 - Metastatic mechanism for LAM discovered (Akt signaling) and sirolimus is found to shrink kidney tumors in TSC mice by blocking Akt signaling

2003 - Cincinnati-based angiomyolipoma sirolimus trial begins

2004 - First $1 million fundraising year

2005 - Multicenter International LAM Efficacy of Sirolimus (MILES) Trial developed

-The LAM Foundation celebrates 10 years of providing support and funding leading research efforts to find a cure for LAM

2006 - Multicenter International LAM Efficacy of Sirolimus (MILES) Trial begins enrolling patients in a study of sirolimus as a potential treatment for LAM

2007 - Inaugural Meeting of the Worldwide LAM Patient Coalition (WLPC)

2008 - LAM Foundation Clinical Research Network launched

2009 - LAM Liaison Network established

2010 - LAM Foundation scientists determine VEGF-D as a diagnostic blood test for LAM

2011 - MILES Trial reveals sirolimus effective for some women with LAM