A Foundation and a Club for CF

Abstract

In spite of a proliferation of CF research in the 1950s, untested or poorly tested therapies were still common. In large part, this was a consequence of the multisystem nature of the disease, as well as the rapid development of drug therapies in the twentieth century. Patients, their families, and their physicians were often left with many more questions than answers: what is the best way to utilize and/or deliver antibiotics, bronchodilators, and chest physiotherapy? What therapies are available for respiratory support? Do mist tents, steroids, or trypsin help with airway secretions or symptoms of lung disease? How should pancreatic enzymes and vitamins be dosed? These and many other questions – including the possibility of a disease cure – were central to the care of patients with CF, and answers were not easy to get. As a result, parents and families began to band together, and regional organizations supporting CF care formed in the United States to help ensure the best clinical care for their children with CF and to keep families and the public informed about the disease.