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
- 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 august international LAM Scientific Board;
- Raised over $12.5 Million and dedicated more than $7.7 Million to research;
- Funded 83 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;
- Conducted CAST, the first-ever LAM treatment trial, published in NEJM Jan 2009;
- Granted seed money through LAM Awards that generated preliminary data, resulting in additional awards for LAM scientists, including over 20 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 MILES, a pivotal treatment trial for LAM.
- 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 eleven annual 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;
- Gave presentations and managed exhibits for the last 12 years 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 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.
- 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, HHS 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, New Zealand, Japan, Italy, and provided patient speakers for the American Thoracic Society International Conference;
- Launched a major national awareness campaign which includes an Ad Council-endorsed Public Service Announcement in television, radio (English and Spanish) and print (English and Spanish) media.
- 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, Community Forum, and telephone calls and emails;
- Inspired and assisted in the founding of 15 other LAM organizations abroad, including Austria, Australia, Brazil, Canada, China, England, France, Germany, Italy, Japan, New Zealand, Norway, Romania, Spain, and The Netherlands;
- 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 Patient Network (LLPN) in regions throughout the US to connect patients and expand network of hope and support.
- Currently raised over $13 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 25 foreign countries;
- Finalist for the Better Business Bureau Torch Award.
LAM Foundation Leadership Roles
- National Heart, Lung, and Blood Advisory Council - Sue Byrnes
- American Thoracic Society Public Advisory Roundtable - Jill Raleigh
- Co-Director, Rare Lung Diseases Consortium - Frank McCormack, MD
- LAM Registry Tissue Committee - Frank McCormack, MD and 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.