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); and National Organization for Rare Diseases (NORD);
  • 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.
  • Cited in the New England Journal of Medicine (NEJM) as a Model for Patient Advocacy.

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 16 annual International LAM Research Conferences, co-funded by the National Heart, Lung, and Blood Institute, attracting an average of 300 attendees, including an average of 100 investigators;
  • Gave presentations and managed exhibits at the International American Thoracic Society (ATS) Conference, 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 Australia, Canada, China, Germany, England, Italy, Japan, China, Spain, New Zealand, Ireland, Russia, at the United Nations, and all across 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 $16 Million since inception;
  • Over 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 and in many foreign countries.

Foundation Leadership Roles and Awards

  • National Heart, Lung, and Blood Advisory Council
  • American Thoracic Society Public Advisory Roundtable
  • Co-Director, Rare Lung Diseases Consortium
  • LAM Registry Tissue Committee
  • Better Business Bureau (BBB) Torch Award for Ethics
  • Charity Navigator coveted 4-star rating for sound fiscal management and commitment to accountability and transparency
  • American Thoracic Society Public Service 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
  • NORD’s Partners In Progress Award
  • Public Advisory Roundtable (PAR) Excellence Award
  • ATS Distinguished Achievement Award
  • 2011 Top 10 Clinical Research Achievements Award

Patient Support

  • Continually provides an extraordinary network of support to women with LAM worldwide through the Journeys newsletter, Currents e-newsletter, Personal Journeys With LAM, Journeys with Lung Transplantation, a LAM patient ListServ, group-specific Facebook pages, telephone calls, and emails;
  • Founded the Worldwide LAM Patient Coalition (WLPC), comprised of 18 LAM organizations abroad, including Australia, Austria, Brazil, Canada, China, England, France, Germany, Israel, Italy,  Japan, Mexico, New Zealand, Norway, Romania, Spain, Sweden, and The Netherlands;
  • Developed brochures and a LAM Patient Handbook that have been translated into Japanese, Chinese, German, Spanish, Dutch, and French;
  • Established a national LAM Liaison Patient Network (LLPN) in 20 regions throughout the US to connect patients and to expand a 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;
  • Developed a system to acquire and distribute LAM tissues obtained at transplantation for research, which has evolved into a large tissue repository at the National Disease Research Interchange (NDRI);
  • Developed a robust research portfolio based on investigator-initiated projects and rigorous peer review by an august international LAM Scientific Board;
  • Raised over $16 Million and dedicated more than $10 Million to research;
  • Funded 97 research projects that made clinical trials in LAM possible, through discovery of the genetic basis of LAM, its relationship to tuberous sclerosis, and the identity of molecular targets for therapy;
  • Granted seed money that generated preliminary data, resulting in LAM scientists receiving over $38 Million in subsequent awards from the National Institutes of Health (NIH), Department of Defense, and other funding sources;
  • Co-funded research with other foreign LAM organizations, including Canada, Germany, Japan, and The Netherlands;
  • Provided partial funding for the CAST Trial, the first-ever LAM treatment trial;
  • Provided partial funding and recruitment and operational support for the MILES Trial, which identified a treatment for LAM;
  • Provided partial funding and recruitment support for the TRAIL Trial;
  • Obtained Orphan Drug Designation from the FDA for Sirolimus in LAM;
  • Developed a network of 26 LAM Clinics that provide a platform for clinical trials and health care quality improvement in LAM;
  • Obtained an ICD-9 code for LAM.