Hi, We are Jaryn’s Village and walking for Jaryn who is currently 5 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, and
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).
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. I 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!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.