Although cystic fibrosis is not common, it is well known in respiratory circles because it is a disease that has been a model of how we can approach and resolve an important problem. Over the last 50 years, cystic fibrosis has gone from an illness marked by emaciated children in an ICU or dying before their teenage years to one where the majority of affected persons now are adults, with many living productive lives. It is a model disease because the essence of what goes wrong is now known and steps to make lives better are in place.
Success has come about by the combined effort and partnership of patients, families, nurses, physicians, and other members of the health care team, research scientists, and industry. The success has not only been in discovering the genetic cause and pharmacologic treatments of the genetic defect, but also by improving many functions, such as treating infections, replacing pancreatic enzymes, managing hydration and nutrition, and promoting physical fitness. Science has greatly contributed to the success of cystic fibrosis, and cystic fibrosis has greatly contributed to the success of science by providing clues to the understanding of enzymatic mechanisms and health from basic science to clinical trials.
The American Thoracic Society was founded on the principle that research is the basis for advancing better health for all. Its annual conference and journals regularly contain important studies on cystic fibrosis and are often the nidus for developing new research ideas or refining existing ones. The ATS international conference gathers science and medical persons as individuals and as working groups to flesh out and learn about specific aspects of cystic fibrosis lung disease and treatment. The Foundation of the American Thoracic Society supports research on cystic fibrosis.
The American Thoracic Society is promoting awareness of cystic fibrosis lung disease by dedicating a week to focus on this disease and engaging the public and press, as well as the patients, families, medical teams, and scientists, to promote its awareness and understanding, highlight exciting studies, and promoting enthusiasm for the research being conducted and the research still needed to be done.
Beth Sufian, JD
Director, CF Legal Information Hotline
Cystic Fibrosis Foundation
Member, ATS Public Advisory Roundtable
Dean E. Schraufnagel, MD
Pulmonary, Critical Care, Sleep, and Allergy
University of Illinois at Chicago
Chair, ATS Foundation Board of Trustees