Hi! We are Evelyn’s Angels! Evelyn turned 6 on February 13th of this year and on March 1st of 2017 when she was only 2 weeks old her mom and dad found out she 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 at least 6 years old 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 functions, pancreatic insufficiency, and 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 still 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 dontation 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!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. Will you join me and support my fundraising goal?
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.
Please support me!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!
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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.
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