Hi! My name is Evelyn and I will be 3 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 over the last few months. In October a ground breaking drug called Trikafta was approved by the FDA. This drug, called a genetic modulator, allows 90% of people with CF to essentially hit the pause button on their disease. This drug has been groundbreaking for our community. When Evelyn was born the life expectancy was in the 30's but it is now 47 and with the help of Trikafta we are hopeful she will have a full and healthy life! But despite the breakthroughs there is still no cure for this devastating disease and many lives are cut far too short. There's still 10% of people who live with CF that don't have groundbreaking drugs like Trikafta to take. So how can you help?
By walking on May 2nd in Knoxville we are helping add tomorrows to the lives of people living with Cystic Fibrosis. Will you join us? The walk will take place at The Cove at Concord Park in Knoxville, TN. Check in is at 9:00 am and the 1 mile walk starts at 10:30 am. Come meet us there at Evelyn's tent and enjoy some hot coffee and doughnuts then stick around and find out what the CF community is all about!
We would love to see you there May 2nd but either way 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.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.