We would love to have you join us in coming together in support of those with cystic fibrosis and in celebration of all the advancements brought on through the CFF.
For those that aren't familiar, CF is primarily a lung disease although it affects other body systems as well. Rylee's daily routine consists of two 30-minute vest treatments with one nebulized medication in the morning and one at night. She has a variety of meds she takes each morning and night, as well as more pills each time she eats. In all she takes around 20-25 pills a day. Everything is very much routine to her now since she has been taking meds since diagnosis at 10 days old. Somehow she finds no trouble swallowing nine pills at a time! In addition to her daily meds, Rylee also visits the Sanford castle to see her CF care team every three months. She works with a variety of providers (pulmonologist, respiratory therapist, dietician, etc.) to make sure she continues to stay healthy. While she has finally mastered the throat swab at every visit, she is still very leery of needles.
While CF is a big part of Rylee's daily routine, it is also just a small piece of who she is. Most people who know Rylee have no idea that she goes through any of this. Kids at school might know she takes pills before lunch, but otherwise there are no outward symptoms others notice. Most people just see that Rylee is a huge Taylor Swift fan and loves figure skating, volleyball, and anything purple!
This will be our 12th Great Strides event, and we would love to have you join us! The walk will be at Riverdale Park in Sioux Falls the morning of Saturday, June 8. Please register through this page by clicking on "Join This Team." If you are not able to attend the walk but would like to support Rylee's Rockstars, you can make donations through this page. Thanks to all of you who have supported Rylee over the years!
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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.