MILES Trial

History of LAM

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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 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 leading research effortsto 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)

 

 

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