The Life of a Child by Frank Deford

Alexandra Deford, a precious and precocious girl, was just eight years old when she died in 1980 following a battle against the debilitating effects of cystic fibrosis, the number-one genetic killer of children. Her poignant and uplifting story touched the hearts of millions when it was first published and then made into a memorable television movie. A new introduction contains information on the latest cystic fibrosis research, and a touching postscript reveals how the Deford family came to terms with the loss of Alex.

61 Broadway, 6th Floor
NY, NY 10006
1-800-LUNGUSA
The mission of the American Lung Association (ALA) is to prevent lung disease and promote lung health by helping those who are already affected by disease, by searching for cures and better treatments, and by protecting all our lungs from the threat of environmental hazards.

6931 Arlington Rd.
Bethesda, MD 20814
1-800-344-4823
Mission statement: ‘The Cystic Fibrosis Foundation is a donor-supported, nonprofit organization whose mission is to find therapies--and eventually a cure--for cystic fibrosis (CF), and to improving the quality of life for those with the disease.’

Everything You Need to Know by Wayne Kepron
Cystic fibrosis afflicts approximately 30,000 Americans. The average age of survival has been steadily increasing, but not quickly enough: a child born with cystic fibrosis today can only expect to live 35 to 40 years. In this valuable new addition to the Your Personal Health series, Dr. Wayne Kepron offers a comprehensive look at the disease that afflicts so many young people. Topics include: - Symptoms of cystic fibrosis - Making a diagnosis - Complications of the disease - Treatments (including lung transplants) - Techniques and precautions in lung care - Transition into adulthood - Prospects for gene therapy - End-of-life issues. Using diagrams, charts and case studies, Cystic Fibrosis is designed for patients, their families, and caregivers. It is both a quick reference guide and a tool for in-depth study.

for Patient and Family by David M. Orenstein

Written by Dr. David Orenstein, director of one of the nation's leading CF centers, this one-of-a-kind guide offers clear explanations and real-world advice on cystic fibrosis and its management. Patients, families, and health care professionals will find practical and reassuring information on day-to-day concerns--school, travel, exercise, nutrition, medication--as well as on physiological effects, treatments, complications, long-term issues, and the prospects for a cure. Updated and revised throughout, the Second Edition helps readers find the information they need quickly. Each chapter now begins with a quick list, so the reader can know at a glance what topics are covered. The book also provides a handy glossary of terms, a glossary of commonly prescribed drugs, techniques for clearing the airway, recipes new chapters on genetics, the basic cellular defect in cystic fibrosis, and cystic fibrosis and adulthood.

Health Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
(301) 592 8573
nhlbiinfo@nhlbi.nih.gov
The NHLBI 'provides leadership for a national program in diseases of the heart, blood vessels, lung, and blood; blood resources; and sleep disorders'.  The institute plans and conducts research in hopes of o discovering the causes, prevention, diagnosis, and treatment of heart, lung, and blood diseases as well as sleeping disorders.