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The LAM Foundation
www.thelamfoundation.org
In the fall of 1994, Andrea Byrnes, the daughter of Fran and Sue Byrnes of Cincinnati, Ohio, was diagnosed with Lymphangioleiomyomatosis (LAM) at the age of twenty-two. No known cause, no cure, and no effective treatment be found for this rare lung disease, and at that time, very little research had been done. The Byrneses initiated a letter writing campaign to convince the National Institutes of Health to form a registry of LAM patients.
Because of the tremendous support from Congress, and the lay and medical communities, the Byrneses were invited to the National Heart, Lung and Blood Institute (NHLBI) on July 26, 1995. The NHLBI showed great concern for women with LAM and has since initiated a national registry of LAM patients, intramural research, a five year protocol of LAM patients, and Program Announcement advertising for grant proposals. In addition, they conducted a LAM Workshop in 1997 and published a book on LAM to stimulate LAM research.
The LAM Foundation was established by the Byrneses in August 1995 as a 501(c)(3) nonprofit organization with research as its central mission. Since its inception, the Foundation has raised over $4,000,000, primarily through fund raising activities organized by LAM patients and their families. The Foundation has awarded 44 LAM Fellowships and Pilot Projects for the study of the cellular and molecular basis of LAM. Two of those scientists reported a discovery regarding the genetics of LAM in 1998. In May 2000, an article was published by Dr. Elizabeth Henske from the Fox Chase Cancer Center reporting a MAJOR BREAKTHROUGH! In 2002, LAM Foundation scientist Vera Krymskaya discovered that a drug called rapamycin stops the growth of smooth muscle cells.
Doctors are being educated about LAM and awareness is being raised internationally through videos, conferences and educational materials. A database of demographic information on the largest population of LAM patients ever assembled has been developed through the Foundation and serves as a resource for interested patients, physicians and scientists. In conjunction with the lung transplant centers and the NHLBI; invaluable LAM tissue has been preserved for research. Support is provided for LAM patients through a LAM directory, a patient newsletter, and a LISTSERV on the LAM Foundation web site. Through its dedication to find a cure for this tragic disease, The LAM Foundation brings a Breath of Hope to women with LAM throughout the world.
For more information about LAM, contact:
Ms. Sue Byrnes
Director of Research & Educational Programs,
The LAM Foundation
Tel: 513-777-7743
Fax: 513-777-7643
E-mail: sbyrnes@thelamfoundation.org
Leslie Sullivan-Stacey
President and CEO
The LAM Foundation
4015 Executive Park Dr., Suite 320
Cincinnati, OH 45241
Tel: 513-777-6889, Ext. 103
Fax: 513-777-4109
E-mail: lsullivanstacey@thelamfoundation.org
Dr. Frank McCormack
Scientific Director, The LAM Foundation
Director, Division of Pulmonary and Critical Care
University of Cincinnati, MSB 6004
231 Albert Sabin Way
Cincinnati, OH 45267-0564
Tel: 513-558-4831
Fax: 513-558-4858
E-mail: frank.mccormack@uc.edu |
