The 2022 Des Moines Great Strides for Cystic Fibrosis walk is May 14. Tula’s Capes and Tiarashas been striding since 2011 to help add tomorrows for Tula and approximately 30,000 other Americans who live with cystic fibrosis.
Tula will be 12 on June 28. As most of you know, she was diagnosed a few days after birth with this lifelong genetic disease affecting both her lungs and digestive system. Her daily regime includes: nebulizer and chest therapy before school and bed, daily medications to fight respiratory infections, digestive enzymes before every meal and snack to help her digest and absorb nutrition, and an overnight tube feed to supplement her regular meals and help maintain weight.
Tula’s mother Ryann is the team captain of North Carolina Tula's Capes and Tiaras. Tula’s Aunt Kim is actively involved in the Rocky Mountain Cystic Fibrosis Foundation chapter and is a board member of that group.
“Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all.” (Emily Dickinson)
Nearly every CF drug available today was made possible because of the support of the Cystic Fibrosis Foundation, funded by donors like YOU.Every contribution hastens the day when CFF signifies CURE FINALLY FOUND.
Iowa Tula's Capes and Tiaras team members have really appreciated your previous financial and/or prayerful support; we hope you are able to support us again in 2022.
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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.