As you are probably aware, Vida and Soren were born with Cystic Fibrosis (an inherited chronic disease that affects their lungs). Both continue to doctor at the American Family Children’s Hospital in Madison and have regular checkups. They receive chest therapy and nebulizer treatments, take inhalers and nasal sprays, get chest x-rays, EKGs, and throat cultures and have blood drawn on a regular basis. Vida had been taking the new drug Kalydeco™ since it was approved by the FDA in May of 2015 and recently switched over to Trikafta. It is somewhat a “miracle drug” and the first of its kind to treat the underlying cause of CF and not just the symptoms. Soren has also been taking Kalydeco as part of a clinical trial since he turned one. In November, Vida had a bit of a setback when she cultured pseudomonas and therefore had to add a TOBI nebulizer two times a day for 20 minutes each to her daily treatments.
Vida is 11 and is in the fifth grade. She loves riding horse, Chipotle, basketball, swimming, and hanging out with her sister (Devan is a carrier of CF but does not have the disease). Soren turns 6 in April and loves the grinch, Jurassic World, King Kong vs Godzilla, and chocolate milk.
Throughout the last ten years, team “Chute for a Cure” has raised more than $87,000 for the CFF. We are still working toward, praying for, and believing that a cure will be found. All donations to the Cystic Fibrosis Foundation will help add tomorrows to the lives of adults and children living with this disease. Along with your support, the CFF, our doctors, and God, we know that Vida and Soren will be cured. We thank you so much for your love, prayers, kind words, and support.
Rusty, Shannon, Vida, Devan, and Soren Chute (& Reggie)
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.