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.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.