Our son Joey is 5 years old. He was diagnosed with Cystic Fibrosis at 2 weeks old. Cystic fibrosis is a genetic disorder that affects the lungs and digestive system, causing thick, sticky mucus to build up, leading to respiratory and digestive issues. Over the years, there have been significant advancements in treatments and research, helping extend the lives of those with CF.

Joey is taking (Trikafta) which is a groundbreaking medication developed by Vertex Pharmaceuticals for the treatment of cystic fibrosis. It was approved by the FDA in 2019 for individuals with certain genetic mutations of CF, specifically those with the F508del mutation, which is the most common CF mutation. Trikafta is a combination of three drugs: elexacaftor, tezacaftor, and ivacaftor. This combination helps improve the function of the CFTR protein, which is defective in people with cystic fibrosis, by enhancing its trafficking and function at the cellular level.The introduction of Trikafta has been a game-changer for many individuals with CF. It has shown significant improvements in lung function, respiratory symptoms, and overall quality of life, particularly for those who have the most common CF mutations. Before treatments like Trikafta, individuals with CF faced a much shorter lifespan, but with newer therapies, many are living longer, healthier lives.The combined efforts of fundraising events like Great Strides, advancements in CF treatments like Trikafta, and continued research are significantly improving the outlook for individuals with cystic fibrosis

Join our team “Joey The Ultimate Warrior” and help us get one step closer to a cure for cystic fibrosis. With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled in the last 30 years. Despite this progress, many people with CF do not benefit from existing therapies either because their disease is too advanced or because their specific genetic mutations will not respond. They are moms, dads, sisters, brothers, daughters, sons, friends, and co- workers who struggle every day in the face of this disease. 

We walk in Great Strides for them.

Point Pleasant, Saturday, May 17, 2025
Registration: 10AM and Walk Begins: 11AM

Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CE To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising. By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let's make CF stand for Cure Found!