The LAM Foundation Achievements

The definition of an accomplishment is an action or activity that results in an important effect. The LAM Foundation believes that research advances, in great part, come from scientists who are passionate about curing LAM and who are taking action on their own ideas with the help of LAM Foundation seed funding that places federal support within their grasp. Our method has withstood the test of time. Our accomplishments are a testament to the dedication of The LAM Foundation staff and, more importantly, the LAM community. They are achievements that will bring the cure closer.

Advocacy/Awareness

• Testified before Congress on behalf of rare diseases;

• Successfully lobbied House Appropriations Committee in years 2000 through 2006, and Senate Appropriations Committees in 2006 and 2009 to have report language on LAM included in the Labor, Health and Human Services,and Education Appropriations Bills;

• Spoke about LAM at the United Nations;

• Featured in national magazines and newspapers, including Wall Street Journal, Washington Post, American Respiratory Care, Advanced Respiratory Magazine, Family Circle, Woman's Day, Jet Magazine, For the Record and Philanthropy World;

• Cultivated a productive, collaborative relationship with the National Heart, Lung, and Blood Institute;

• Selected for National Health Council (NHC) membership and created productive affiliations with the TS Alliance (TSA), American Lung Association (ALA), and American Thoracic Society (ATS);

• Gave LAM presentations in Australia, China, Italy, Japan and New Zealand and provided patient speakers for the American Thoracic Society International Conference;

• Launched a major national awareness campaign which included an Ad Council-endorsed Public Service Announcement in television, radio (English and Spanish) and print (English and Spanish) media.

Education

• Conducted the first-ever annual LAM patient/family conference in 1997 and co-funded the first LAM scientific meeting held at Columbia University in 1999;

• Organized and executed 14annual International LAM Research Conferences, co-funded by the National Heart, Lung, and Blood Institute, and sponsored by the Boston LAM Seminars at Harvard University in 2006;

• Created the primary forum for scientific discussion in LAM through outstanding annual meetings that attract 300 conference attendees, including an average of 100 investigators;

• Give presentations and manage exhibits at the International American Thoracic Society (ATS) Conferences, the American College of Chest Physicians (ACCP), European Respiratory Society (ERS), Tuberous Sclerosis Alliance (TSA), American Lung (continue with next bullet)Association Catch Your Breath conferences, and the Canadian Lung Conference, to educate the medical community;

• Delivered LAM research and educational presentations to investigators and patients in New Zealand, Australia, Japan, England, Canada, Italy, at the United Nations, and all over the United States;

• Developed a plan to educate pulmonologists, nephrologists, gynecologists, internists, neurologists, and Emergency Medicine Physicians, to identify women with LAM, and to acquire LAM patient referrals.

Fundraising

• Currently raised over $14 Million since inception;

• Nearly 90% of all funds raised were in honor of a LAM patient;

• Increased number of annual donors from 1,438 to over 15,000;

• Increased number of LAM fundraisers from 3 to over 300 events, in addition to memorials and honorariums;

• Raised funds in all 50 states, the Commonwealth of Puerto Rico, and many foreign countries.

LAM Foundation Leadership Roles and Awards

• National Heart, Lung, and Blood Advisory Council

• American Thoracic Society Public Advisory Roundtable

• Co-Director, Rare Lung Diseases Consortium (Frank McCormack, MD)

• LAM Registry Tissue Committee

• Recipient of the Better Business Bureau Torch Award for Ethics

• American Thoracic Society Public Service Award

• NORD Partners in Progress Award

• National American Lung Association Founders Award

• Fatima El-Fehria International Award for Women in Science

• Speaking of Women’s Health Award

• Woman’s Day Award

• Freedom Heroes Award

Patient Support

• Provide an extraordinary network of support to women with LAM worldwide through the Journeys newsletter, an Advocacy Program, Personal Journeys With LAM, Journeys with Lung Transplantation, a LAM patient ListServ, Facebook, and telephone calls and emails;

• Inspired and assisted in the founding of 17other LAM organizations abroad, including Austria, Australia, Brazil, Canada, China, France, Germany, Italy, Japan, Mexico, New Zealand, Norway, Romania, Spain, Sweden, The Netherlands and the United Kingdom;

• Developed a LAM patient handbook and brochures that have been translated into Japanese, Chinese, German, Spanish, Dutch, and French;

• Formed the Worldwide LAM Patient Coalition (WLPC) to enable collaboration with 17different patient organizations to facilitate research;

• Established a national LAM Liaison Patient Network (LLPN) in 20 regions throughout the US to connect patients and expand network of hope and support.

Funded Research

• Convinced the National Heart, Lung, and Blood Institute (NHLBI) to establish a National LAM Registry and to initiate an intramural research program, a $20 Million investment by the NHLBI;

• Developed a system to acquire and distribute LAM tissues obtained at lung transplantation for research;

• Developed a robust research program based on investigator-initiated projects and rigorous peer review by an international LAM Scientific Board;

• Raised over $14 Million and dedicated more than $8.5 Million to research;

• Funded 87 research projects that produced major breakthroughs, which made clinical trials possible, including the genetic basis of LAM, its relationship to tuberous sclerosis, and the identity of molecular targets for therapy;

• Helped fund CAST, the first-ever LAM-related treatment trial, published in the New England Journal of Medicine;

• Granted seed money through LAM Awards that generated preliminary data, resulting in additional awards for LAM scientists, including over 25 NIH RO1 grants;

• Co-funded research with other foreign LAM organizations, including Germany, Canada, Japan, and The Netherlands;

• CAST Trial article and VEGF-D letter published in the New England Journal of Medicine;

• Funded and provided operational support for the MILES Trial, a pivotal treatment trial for LAM.

• MILES Trial results published in the New England Journal of Medicine.