Our daughter, Ellis, was born with cystic fibrosis - a rare, genetic, life-shortening disease that makes it difficult to breathe. For Ellis, to maintain her health is hard work. She takes 15-20 pills a day and spends a hour each day, 30 minutes in the morning and 30 minutes at night, hooked up to a machine that shakes her body. These treatments loosen up the mucus so that she can cough it out more easily. I often forget that she is only 8 years old...already she takes on so much responsibility.
She has had the opportunity to participate in pivotal life changing clinical trials. These trials require rigor to maintain her health so that she can continue to participate and help to push lifesaving medicines through the system and out to the rest of the
Today, because of improved medical treatments and care, more than half of people with CF are age 18 or older. Many people with CF can expect to live healthy, fulfilling lives into their 30s, 40s, and beyond.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.