Join us on sample date
Within the first few hours of being born, we received the diagnosis that Bishop, my son, has Cystic Fibrosis. In the mid-90's, the diagnosis was hopefully but bleak as parents of a new-born staring into an unknown future that laid ahead. Our CF journey had begun.
Fast-forward 25 years, Bishop is a young professional living in our Charlotte community navigating life with his wife, Morgan Saunders. He has had the opportunity to begin taking TRIKAFTA, a breakthrough treatment for people with CF targeting CFTR protein defect in the gene mutation thus "fixing" the problem at the source. While taking this drug, his life has changed drastically thanks to the hard work & dedication of researchers, patients, families & doctors making up the CF community. Less sleepless nights spent coughing, less hospital visits, less mental and physical trauma and MORE experiencing life as you and I do.
We are hopefully this event will be another critical step towards continued medical advancement and community awareness adding tomorrows for CF Fighters around the globe - adding tomorrows for Bishop.
What is Cystic Fibrosis?
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to help move chloride -- a component of salt -- to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky.
In the lungs, the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications. For this reason, minimizing contact with germs is a top concern for people with CF.
In the pancreas, the buildup of mucus prevents the release of digestive enzymes that help the body absorb food and key nutrients, resulting in malnutrition and poor growth. In the liver, the thick mucus can block the bile duct, causing liver disease. In men, CF can affect their ability to have children.
Symptoms of CF
- People with CF can have a variety of symptoms, including
- Very salty-tasting skin
- Persistent coughing, at times with phlegm
- Frequent lung infections including pneumonia or bronchitis
- Wheezing or shortness of breath
- Poor growth or weight gain in spite of a good appetite
- Frequent greasy, bulky stools or difficulty with bowel movements
- Male infertility
To learn more about Cystic Fibrosis, the diagnosis, research, treatments, please visit the CFF website linked below!