When our 6 year old son Evan was only 5 weeks old, he was diagnosed with Cystic Fibrosis. Cystic Fibrosis (CF) is a chronic, terminal, genetic disease that causes thick sticky mucus to build up in the lungs and other organs.
In the 1950s when the disease was first discovered and treated, doctors would tell parents that their CF children would not likely live long enough to attend elementary school. Life expectancy was 5. A small group of parents formed the Cystic Fibrosis Foundation and they went to work. Today the foundation has raised billions of dollars in an effort to find a cure for Cystic Fibrosis.
Evan undergoes 90 minutes of intense lung therapy each day, and takes 20+ pills and multiple inhaled medications to stay healthy. And even then he will often have to spend weeks in the hospital to clear infection and mucus from his lungs.
While the day-to-day struggles are real, the future for CFers has never looked brighter. Today life expectancy is 41. And new drugs, some approved just last year, will expand that life expectancy even more. The story of treating CF is the greatest story in modern medicine. But we aren’t done yet. We need your help to get across the goal line and cure CF once and for all. We won’t rest until CF stands for ‘Cure Found’.
We hope you’ll join us in adding tomorrows for our Evan.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.