Cystic Fibrosis (“CF”) is a genetic disease that has no cure and is fatal for its patients.  Below are some facts that will help you understand why we do what we do.

  • there are approximately 30,000 people living with CF in the United States and approximately 70,000 worldwide
  • the life expectancy in 1983 when Ed was born was approximately 14 years
  • an estimated 45% of the CF population is over the age of 18
  • breakthroughs in treatment have extended the life expectancy of CF patients dramatically, as the current life expectancy for CF patients is roughly 37 years

This recent influx of “older” CF patients has created a need for awareness and services to improve the quality of life for those CF patients that get a greater chance to actually live a longer life.