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!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.