My Great Strides Story
There is currently no cure for cystic fibrosis. By participating in Great Strides, we are helping to end this disease for thousands of people impacted by CF.
Cystic fibrosis affects the lungs, pancreas, and other organs. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues.
Charlee was diagnosed prenatally with genetic testing. An amniocentesis was performed to confirm her diagnosis of Cystic Fibrosis. Shortly after she was born she underwent an 8 hour abdominal surgery due to her having meconium ileus, followed by a 4 week NICU stay. She was born a fighter and continued to show resilience throughout her early years with hospital admissions and many ED visits due to CF related GI issues. Charlee was lucky enough to start her first gene modulator (Orkambi) at 2 years old. At 5 years old she started her second gene modulator (Trikafta) which has been an absolute game changer thus far. None of these medical advances would be possible without the help of donations as CF doesn’t receive federal funding for research. We can’t wait to participate in this years Great Stride Walk and continue to spread awareness and garter support for Charlee and everyone living with Cystic Fibrosis!
The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit ofrom them. We must keep going.
Your support makes a difference.
By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found.
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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.