Hi, We are Jaryn’s Village and walking for Jaryn who is currently 7 years old. She was 10 days old when her parents were told that she likely had Cystic Fibrosis (CF). Since birth, she has experienced pancreatic insufficiency, failure to thrive, major constipation, and harsher/longer common colds. To date, she has been fairly healthy, but does have additions to her daily life that those without CF do not experience, including:
- Taking enzymes for pancreatic insufficiency to assist her body in absorbing nutrition,
- A gastrostomy tube placed at 13mo to receive daily & nightly feeds for supplemental nutrition,
- Taking Miralax to reduce/prevent the major constipation,
- Adding salt to her daily diet to replace the additional salt lost,
- Doing daily Chest Physical Therapy (CPT) to prevent buildup in her lungs (luckily she now has a Vest machine so her dad and mom no longer do it manually), and
- Daily regimen of medications.
Real progress has been made for those who have CF, but there is still no cure for this devastating terminal disease. The life expectancy of someone born with CF has doubled in the last 30 years, but many lives are cut far too short. We’ve come so far, but there’s still so much work to do. We will not stop striding until all those with cystic fibrosis have a cure! We will not leave anyone behind!
Please join and or support us!
To join us in the walk, just click on the "Join this 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. 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 CF.
To make a donation, just click on the “Donate to a Team Member” button. We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Please help us reach our fundraising goal!
Together, we can 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.