- convinced the National Institutes of Health (NIH) to form a national registry of LAM patients at a cost of $5,000,000.
- focused national attention on LAM for the first time.
- encouraged the National Heart, Lung and Blood Institute (NHLBI) to:
° issue a program announcement advertising for meritorious LAM related
proposals;
° initiate a 5 year protocol of LAM patients;
° publish a book on LAM to stimulate research;
° and conduct a workshop on LAM for scientists throughout the world.
- educated the medical and lay communities about LAM.
- assembled the largest population of LAM patients ever, averaging 150 patients per year.
- conducted ongoing programs for education and support for LAM patients and their families.
- developed a database of demographic information on women with LAM.
- compiled valuable scientific data on LAM patients for doctors and scientists.
- gained a reputation as an indispensable international resource.
- procured invaluable fresh tissue for research at the time of lung transplantation.
- traveled to other countries to raise an awareness of LAM and advertise grant proposals.
- gained international recognition and became a source of information, support, education and funding for LAM internationally.
- testified before Congress on behalf of rare diseases.
- raised nearly $5,000,000 in the first 8 years of existence, allocating nearly 90% to research.
- awarded grants to 48 investigators for the study of LAM.
- gained the interest of high-quality investigators from well-established labs.
- funded basic research which led to a major discovery regarding the genetics of LAM.
- provided seed money that led to five LAM NIH (RO1) grants.
- initiated the first conference for LAM patients and their families.
- assembled a Scientific Board composed of foremost LAM scientists and clinicians.
- raised the profile of LAM in the scientific community by several orders of magnitude.
- conducted the first LAM Conference in conjunction with cosponsors, NHLBI and Columbia University in the fall of 1999.
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