The LAM Foundation: Giving Hope to LAM Patients and Families
Posted by Charity Watcher on Tuesday, December 15, 2015
In 1994, Sue Byrnes realized that patients diagnosed with lymphangioleiomyomatosis (LAM), a rare lung disease, have little to no informational resources, no valuable support groups, and no scientific studies to support the move toward a cure. Indeed, it seemed at the time that there was no hope for LAM patients and their families.
And thus Byrnes’ life mission began. She first started the Labor of Love campaign, which involved writing to every known LAM patient as well as contacting numerous women’s organizations, schools and churches across 40 states that may have a stake in LAM treatment. Thousands of doctors and members of the Ohio Education Association also wrote to their Congress representatives to support a LAM registry.
By 1995, The LAM Foundation was established, which has since then grown to become the driving force for the advancement of three things, namely: the search for effective management methods and, ultimately, a cure for LAM; the provision of an effective support and education network of women affected by the disorder; and the database for useful resources for healthcare professionals, researchers, and scientists.
The LAM Foundation has achieved many successes in these goals including:
• The development of a LAM patient registry, which includes a tissue bank, at the National Institute of Health’s National Heart, Lung and Blood Institute (NHLBI) with the registry providing valuable information that can assist physicians, scientists, and researchers to gain more knowledge about LAM;
• The development of a LAM protocol by the NHLBI, which provided free-of-charge medical evaluation for LAM patients every 6 months;
• The formation of model collaboration with the institute, which has also invested more than $20 million in the foundation;
• The conduct of a wide range of educational activities including the annual LAM patient and family conference, the annual LAM International Research Conferences, and the presentations of research about LAM to stakeholders including the International American Thoracic Society (ATS) Conference, European Respiratory Society (ERS), and the American College of Chest Physicians (ACCP);
The Lam Foundation also takes pride in its fundraising activities, which has raised over $16 million and counting, majority of which were given to LAM research. The foundation has also been honored for its fiscal responsibility, such as its 4-star rating from Charity Navigator and its
Better Business Bureau (BBB) Torch Award for Ethics.
And thus Byrnes’ life mission began. She first started the Labor of Love campaign, which involved writing to every known LAM patient as well as contacting numerous women’s organizations, schools and churches across 40 states that may have a stake in LAM treatment. Thousands of doctors and members of the Ohio Education Association also wrote to their Congress representatives to support a LAM registry.
By 1995, The LAM Foundation was established, which has since then grown to become the driving force for the advancement of three things, namely: the search for effective management methods and, ultimately, a cure for LAM; the provision of an effective support and education network of women affected by the disorder; and the database for useful resources for healthcare professionals, researchers, and scientists.
The LAM Foundation has achieved many successes in these goals including:
• The development of a LAM patient registry, which includes a tissue bank, at the National Institute of Health’s National Heart, Lung and Blood Institute (NHLBI) with the registry providing valuable information that can assist physicians, scientists, and researchers to gain more knowledge about LAM;
• The development of a LAM protocol by the NHLBI, which provided free-of-charge medical evaluation for LAM patients every 6 months;
• The formation of model collaboration with the institute, which has also invested more than $20 million in the foundation;
• The conduct of a wide range of educational activities including the annual LAM patient and family conference, the annual LAM International Research Conferences, and the presentations of research about LAM to stakeholders including the International American Thoracic Society (ATS) Conference, European Respiratory Society (ERS), and the American College of Chest Physicians (ACCP);
The Lam Foundation also takes pride in its fundraising activities, which has raised over $16 million and counting, majority of which were given to LAM research. The foundation has also been honored for its fiscal responsibility, such as its 4-star rating from Charity Navigator and its
Better Business Bureau (BBB) Torch Award for Ethics.
