As many of you know, our 2-year-old daughter Brooke has Cystic Fibrosis (CF), which is a progressive, genetic disease that affects the lungs, pancreas, and other organs.
There are close to 40,000 children and adults living with cystic fibrosis in the United States (and an estimated 105,000 people have been diagnosed with CF across 94 countries), and CF can affect people of every racial and ethnic group.
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, avoiding germs is a top concern for people with CF.
There is currently no cure.
Medical advances, especially over the last few years, give us every reason to be hopeful and optimistic. Babies born with CF in the 1990s had a life expectancy of 18 years. In 2019 that number jumped to 46 and today is 50, but there is still much more work to do. Many people with rare mutations are not eligible for the life-changing gene modulator therapies, and we will continue advocating until CF stands for ‘cure found’.
Thank you for your support!
Elizabeth, Josh & Brooke
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