"CF will NEVER hold me back from doing what I love!" ~ Caroline
Help us get one step closer to a cure for cystic fibrosis! With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF, fueling extraordinary medical and scientific progress.
As most of you know, the Cystic Fibrosis Foundation is the world’s leader in the search for a cure. Nearly every CF drug available today was made possible because of support from the Foundation. According to William Skach, Chief Scientific Officer of the Cystic Fibrosis Foundation, “There has been an explosion of scientific progress in novel technologies with the potential to benefit ALL people with CF.” We have certainly come a loooooong way since Caroline’s diagnosis, but there is still more work to do!
How YOU can make a difference Making a donation to the CF Foundation helps fund scientific research and drug development as well as the CF Care Centers Caroline regularly visits. Right now, the CF Foundation is funding:
*Gene Editing Technology in CF *A broad-spectrum anti-infective to treat drug resistant Pseudomonas (an infection known to cause scarring and lung function decline) * Path to a Cure: Research agreements intended to accelerate treatments for the CAUSE of CF for all people
Covid 19 Update Thankfully, people with CF have fared well during the Pandemic. We are careful, but Caroline is going to school, playing with friends and riding horses!
Starting Trikafta Caroline started Trikafta in June of 2020 when she turned 12. Trikafta treats the CAUSE of Cystic Fibrosis, not just the symptoms! While we did not see the increase in lung function we were hoping for, we are grateful her lungs remain healthy! Many of you know that Caroline has always struggled to gain weight despite trying everything we could think of (other than eating butter by the stick). It is defeating to work hard towards a goal and repeatedly fall short. After being the same weight for over a year, we are celebrating a weight gain of 15 pounds! Our baby girl is growing up=) We are so thankful for her continued good health.
Colorado: Nature’s Playground We enjoy exploring the beauty of our new home state of Colorado. From our cul-de-sac to our local community, to the Rocky Mountains…adventure awaits.
Same Routine, New Hope Caroline is fortunate to benefit from Trikafta, but her routine remains the same. She continues to spend 2-3 hours a day completing airway clearance therapies and tube feeds. Despite the additional time required to maintain her health, Caroline is a straight A student, participated in her first equestrian show, is an excellent Guinea Pig mama to Bumble, plays after school with the neighborhood kids and is meeting new friends now that she is finally back in school full time. Hallelujah!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to 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 not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, 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. 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 wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.