Dear Friends and Family,
Our family is excited to invite you to join us for the 2024 Great Strides walk to cure Cystic Fibrosis! We will be at the Austin FC Q2 Soccer Stadium on May 4th! Check in will be at 9:30a, with the walk starting at 10:30a, then followed with some lunch!
Cystic Fibrosis (CF) is a genetic disease that affects the lungs and digestive system. A channel that controls the salt flow (cystic fibrosis transmembrane conductance regulator) does not work. This makes the mucus thicker, which causes increased lung infections and affects the ability to digest fats and proteins. Both Colt and Willow have cystic fibrosis and spend an hour and a half every day doing breathing treatments to help their lungs stay clear of infections. They take enzymes to help digest food. With the funding from the Cystic Fibrosis Foundation (CFF), a medicine Trikafta, was approved to help the CF channel open and work better. It is not a cure, but has helped Colt and Willow have less infections and grow stronger. The CFF is now working on another medicine that appears to improve the CF channel function even more! Although this is great news for Colt and Willow, there are still 10% of children and adults that don’t have the genetic mutation that allows any of the current medicines to work. We will keep fighting for our friends and for research for improved treatments.
We hope you can walk with us at the Austin Q2 Soccer Stadium on May 4th! Come join Colt and Willow and help support new research and development of medicines to help them thrive! If you are not able to make it on the 4th, you can still support the Aja’s Amigos team by donating for more research.
Our love,
Dan, Nicole, Colt, and Willow
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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.