Flynn’s Crew is back in action again this year! We've been doing this walk and raising money for 4 years now, and it has become such a special day for our family. Come down to The Mall on June 1st to have a snow cone and walk with us as we join together to support cystic fibrosis research!
Sweet, thoughtful, energetic, determined, and creative are just a few words to describe our 5.5-year-old, CF fighter, Flynn. Flynn loves to talk to just about anyone who will listen and has a contagious curiosity for life. He considers himself a Lego Master and loves a good joke book.
We walk to celebrate Flynn, the lives of others living with CF, and those who have passed on. There have already been so many breakthroughs in the short time Flynn has been here on earth, and we want to do our part to keep those breakthroughs coming. On April 26th, 2023, Trikafta, a game-changing drug for so many with CF, received FDA approval for ages 2-5. Flynn has now been on Trikafta for almost a year, and we are beyond grateful. However, Trikafta is not a cure, and there are still too many people out there for whom this drug will not help either because their disease is too advanced or because their specific genetic mutations will not respond. This is why we fundraise and why we will keep fighting.
What is CF?
Cystic Fibrosis (or CF) 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 State (and an estimated 105,000 people who have been diagnosed with CF across 94 countries).
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 is unable to help move chloride - a component of salt - to the cell surface. Without the chloride to attract the water to the cell surface, the mucus in various organs becomes thick and sticky, leading to a much higher risk of infection.
Will you join us?
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
Great Strides Walk Details:
June 1st - Saturday
Check-in: 9:30 AM
Walk: 10:30 AM
Distance: 5k
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.