You may know Colt and Willow from school, church or their many sports activities. They look just like the rest of the kids, but inside their bodies are fighting a battle against one small channel that doesn't work properly. This defective channel causes them to have cystic fibrosis.
Cystic fibrosis is a devastating genetic disease which primarily affects the lungs and pancreas of approximately 30,000 children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation (CFF) are making a huge difference in the lives of those with cystic fibrosis (CF). The CFF has helped discover two new medicines, Kalydeco and Orkambi that help the CF channel work in 58% of those with CF. Kalydeco helps open the gate of the defective channel. Orkambi has an additional compound that helps fold a specific genetic mutation of CF (DF508) into the proper shape. Colt and Willow only have one copy of the DF508 mutation, so they will need a second compound to help fold the channel properly. The clinical trials are starting for this folding compound. The CFF is also awaiting the development of the CRISP/Cas-9 technology to help edit the defective gene for those with CF. This could be the "Cure" that we are hoping and waiting for. All of this research takes money. We are hoping that you will help us get one step closer to the cure.
This year both Colt and Willow needed 2 weeks of IV antibiotics that we were thankfully able to do at home. Colt had an infection that was hard to treat and required 6 months of 3 combined antibiotics. We just finished his antibiotic regimen and now we are hoping that the infection does not come back and his lung function will improve.
You can walk with us at Great Strides, donate to the CFF, start a branch of the Aja's Amigos near you or share our story.
We hope you consider donating to help Colt, Willow and all the others with cystic fibrosis!
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.