Our team is driven by a dream that one day, every person with cystic fibrosis will have the chance to live a long, healthy life. You can help us reach that goal!
Our Great Strides Story
Join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this team" button. From there, you can donate and start fundraising.
As a member of our team, you are joining a growing community of people committed to finding a cure for cystic fibrosis. Together, we can make CF stand for Cure Found.
Owen's Story
On Wednesday January 4th, Owen tested positive for Cystic Fibrosis after completing a sweat test earlier in the day. Zach and Sam found out during pregnancy that they were both carriers for CF, but like many parents thought, "there's no way it will happen to us".
They had an appointment at the CF clinic through CHKD in Norfolk on Friday the 6th from 8am-12pm. They met with a Pulmonologist, Social Worker/Mental Health Coordinator, Dietitian, along with other doctors and nurses who would be a part of their care team. They were given an incredible amount of information, but the ultimate takeaway was that while this disease was once considered terminal, but so many advancements have been made and now people with this diagnosis are now able to live full lives. They were told that Owen would have to undergo many treatments to manage his health daily, but this condition will not impact his quality of life.
He has been through so much already (a ventricular septal defect, torticollis, a dysplastic kidney, and a clubbed foot that he recently underwent surgery to correct), but he is stronger than they could have anticipated. His parents will do anything and everything in their power for their lil camper. They ask that anyone interested in seeking more information refer to the Cystic Fibrosis Foundation website (www.cff.org) for the most accurate data.
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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.