Our team is driven by a dream that one day, every person with Cystic Fibrosis will have the chance to live a long, healthy life. You can help us reach that goal!
Our Great Strides Story
Hi! My name is Evelyn and I turned 6 on February 13th! On March 1st of 2017 when I was only 2 weeks old my mom and dad found out I was born with Cystic Fibrosis.
What is Cystic Fibrosis? The CF Foundation defines Cystic Fibrosis as a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
Cystic Fibrosis is a life threatening disease that affects every aspect of daily life. Daily breathing treatments, medications, chest percussion therapy, and exercise are just a few things done to keep the lungs of those with CF functioning as well as possible. Not to mention the countless amounts of medication taken to help digest fat in the diet due to pancreatic insufficiency.
The good news is that amazing progress has been made for those who have CF. A ground breaking drug called Trikafta was approved by the FDA for CFers with one copy of deltaf508 who are 6 years and older. Trikafta is a genetic modulator that fixes the malfunctioning chloride channel at the cellular level allowing it to work properly. This medication allows 90% of people with CF to have a pause button on progression of their disease. CF fighters have seen improvements in lung function, pancreatic insufficiency, weight gain, and have seen normal sweat chloride levels. It is literally the closest thing we have to a cure.
When Evelyn was born the life expectancy was 37 but now because of Trikafta we are hopeful she will live a full and healthy life. But Trikafta is not a cure and many lives are still cut far too short. 10% of people who live with CF don’t have groundbreaking drugs like Trikafta to take.
By walking on May 6th we are helping add tomorrows to the lives of people living with Cystic Fibrosis. Will you join us? Please consider making a donation to our Great Strides fundraising campaign today! No amount is too small because it all adds up! Your gift will help add tomorrows to the lives of people with Cystic Fibrosis by supporting groundbreaking research and medical progress. Your gift is 100% tax deductible!
Without awareness, there is no funding. Without funding, there is no research. Without research, there is no hope.
WE MUST NEVER LOSE HOPE!
Let's make CF stand for Cure Found!
Join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this team" button. From there, you can donate and start fundraising.
As a member of our team, you are joining a growing community of people committed to finding a cure for Cystic Fibrosis. Together, we can make CF stand for Cure Found.
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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:
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