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.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to 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 not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, 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. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.