Achievements
The LAM Foundation is committed to providing hope and resources for all women with LAM through research, education, awareness and support. Our accomplishments are a testament to the dedication of The LAM Foundation staff and, more importantly, the LAM community.
Research
Education
Advocacy/Awareness
Patient Support
Fundraising
LAM Foundation Leadership Roles
Awards Presented to Founder Sue Byrnes
- Lobbied the National Heart, Lung, and Blood Institute (NHLBI) to establish a National LAM Registry and to initiate an intramural research program, resulting in a $20 million investment by NHLBI;
- Spearheaded the development of a patient database beginning with 9 LAM patients, and identified over 2,000 women with LAM worldwide;
- Devised a system to acquire and distribute patient tissue obtained at lung transplantation for LAM research;
- Developed a robust research program based on investigator-initiated projects and rigorous peer-review by an outstanding International LAM Scientific Advisory Board;
- Funded 79 research projects that produced three major breakthroughs, making the MILES Trial possible;
- Discovered the genetic basis of LAM, its relationship to tuberous sclerosis, and the identity of molecular targets for therapy;
- Began enrollment for the first-ever LAM treatment trial;
- Granted seed money through LAM awards that generated preliminary data, resulting in additional awards for LAM scientists and nine NIH grants (RO1s) that total over $10 million.
- Conducted the first-ever LAM patient/family conference in 1997 and co-funded the first LAM scientific meeting held at Columbia University in 1999;
- Organized and executed nine annual International LAM Research Conferences, co-funded by the National Heart, Lung, and Blood Institute, and sponsored the Boston LAM Seminars at Harvard University in 2006;
- Created LAMposium - the primary forum for scientific discussion of LAM, attracting over 300 conference attendees, including an average of 100 researchers/investigators;
- Delivered presentations and managed exhibits to educate the medical community about LAM at leading medical conferences, including for the International American Thoracic Society (ATS) Conferences, the American College of Chest Physicians (ACCP), European Respiratory Society (ERS), Tuberous Sclerosis Alliance (TSA), American Lung Association Catch Your Breath conferences, and the Canadian Lung Conference;
- Delivered LAM research and educational presentations to investigators and patients in New Zealand, Australia, Japan, England, Canada, at the United Nations, and all over the United States;
- Developed a plan to educate pulmonologists, nephrologists, gynecologists, internists, neurologists and ER physicians, to identify women with LAM, and to acquire LAM patient referrals.
- Testified before Congress on behalf of rare diseases;
- Lobbied through Congress to convince the NHLBI to form a National LAM registry, followed by a LAM Protocol;
- Successfully lobbied House Appropriations Committee in years 2000 through 2007, and Senate Appropriation Committees in 2006 and 2007 to have report language on LAM included in the Labor, HHS and Education Appropriations Bills;
- Spoke at the United Nations about LAM;
- Sponsored "Tour for a Cure", a 13,000-mile trip around the U.S. to raise LAM awareness;
- Cultivated a successful, collaborative relationship with the NHLBI;
- Received invitation for National Health Council (NHC) membership and created productive affiliations with the Tuberous Sclerosis Alliance (TSA), American Lung Association (ALA) now known as and American LungUSA, Thoracic Society (ATS);
- Gave LAM presentations in Australia, New Zealand, Japan and provided patient speakers for the American Thoracic Society International Conference;
- Launched a national awareness campaign;
- Featured in national magazines and newspapers, including American Respiratory Care, Advanced Respiratory Magazine, Family Circle, Woman's Day, Philanthropy World, Washington Post, and Walls Street Journal.
- Provided an extraordinary network of support to women with LAM worldwide through telephone calls, emails, patient newsletter, Advocacy Program, Personal Journeys, Journeys with Lung Transplantation. and the creation of a LAM patient ListServ and Community Forum;
- Inspired and assisted in the founding of 11 other patient organizations in France, Germany, England, Switzerland, Australia, The Netherlands, Japan, Italy, Spain, China, and Canada, three of which are raising funds for The U.S. LAM Foundation;
- Developed a LAM patient handbook and brochures that have been translated into Japanese, Chinese, German. Spanish and French;
- Formed the Worldwide LAM Patient Coalition (WLPC) to enable collaboration with 15 different patient organizations to facilitate research;
- Established a National LAM Liaison Program in regions throughout the US to connect patients and expand a network of hope and support.
- Raised over $10.7 Million since inception;
- Nearly 95% 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 300 events, in addition to memorials and honorariums;
- Raised funds in all 50 states, the Commonwealth of Puerto Rico, and 25 foreign countries;
- Approved by the Better Business Bureau for national membership.
LAM Foundation Leadership Roles
- National Heart, Lung, and Blood Advisory Council - Sue Byrnes
- American Thoracic Society Public Advisory Roundtable - Sue Byrnes
- Co-Director, Rare Lung Disease Consortium - Frank McCormack, MD
- LAM Registry Tissue Committee - Frank McCormack, MD, Sue Byrnes
Awards Presented to Founder Sue Byrnes
- American Thoracic Society Public Service Award
- National American Lung Association Founders Award
- American Lung Association of Chicago Change the Numbers Award
- Fatima El-Fehria International Award for Women in Science
- Speaking of Women's Health Award
- Leading Women Award
- Health Care Heroes Award
- Woman's Day Award
- Freedom Heroes Award
Learn more about the symptoms, cause and treatment of LAM.
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Read about the latest news and happenings in the LAM community.