It’s hard to believe this is our 14th year participating in Great Strides. It’s even harder to believe that Caroline will turn fourteen this June! Time is a thief, but we are happy to report Caroline is thriving and living her best life here in Colorado…
“First and foremost… I’m alive! (That was sarcasm… hehehe) Anyways, I really appreciate y'all donating to CF this year. It allows me, and lots of others, to do what we love! For me, that is horseback riding, reading (like a lot), chilling with my g-pig, and hanging out with friends. And again, thank you!” - Caroline aka Lacky aka Taroweena :)
Daily Life With CF
Can’t you just hear the silly, sarcastic teenager tone? Love it. While Cystic Fibrosis is still very present in Caroline’s life, it mostly involves preventive care. Several hours a day are dedicated to airway clearance and supplemental tube feeds, but her lungs are healthy and she is growing into a beautiful young lady. She continues to take Trikafta to treat the CAUSE of Cystic Fibrosis. While Trikafta seems to keep her lungs/weight stable, we are hoping newer treatments in the pipeline will be even more effective. We are thankful for her health, but there is still work to do!
Cystic Fibrosis Foundation Continues to Fight For a Cure
There are seventeen more drugs in the pipeline to treat the cause of CF! The hope is to find medications/treatments that are taken less frequently, are more effective and treat ALL people living with CF despite their mutation. The dedication of the Cystic Fibrosis Foundation, medical professionals, research scientists, family and friends is having a profound impact! Thanks to CFTR modulators like Trikafta, CF patients are seeing improved lung function and weight gain, starting families, pursuing careers and even coming off lung transplant lists.
The Future Is Bright
Caroline jokes “I’m alive!” But seriously, whether you have been donating for years or are donating for the first time, we hope that you realize your support continues to give Caroline the gift of life. When she was born, the Cystic Fibrosis Foundation described CF as a “life shortening disease” with a life expectancy of around 35. Today, the description reads “Because of improved medical treatments, many people with CF can expect to live healthy, fulfilling lives into their 30s, 40s and beyond. BEYOND! We are winning the battle!
Thanks for continuing to fight with us- Team Toole (Caroline, Katy, Justin, Mya & Ben)
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.