Sophia and Savannah BATTLE Cystic Fibrosis everyday.... It's not something you see when you look at them. On the outside, they look like normal, healthy, happy girls. On the inside, CF is silently filling their lungs with mucus, making it harder to breathe, and its wreaking havoc on their digestive systems. On a daily basis, the girls take between 36-42 pills, nebulize three different medications, and do two-thirty minute chest physiotherapy treatments. It takes getting up early in the morning, and it takes up their playtime at night. When they're sick, its double-time.
They have been taking Kalydeco for four years now, which has opened our lives to new adventures. Where we were once scared of germs, we can now bravely go. While it hasn't been the miracle drug we anticipated, the girls have been healthier than kids with CF who can't take Kalydeco.
We are anxiously awaiting the newest drug, Trikafta, which was approved for ages 12 and up in 2019. Both girls will be able to take it as soon as they turn 12, or it gets approved for ages 6-12, whichever comes first. This drug has proven to be even more effective than Kalydeco, and it corrects the second genetic defect that the girls have.
Taking another medication, while helpful, isn't the end of this war for our girls. We will fight until we have a cure, so they can have as normal of a life as you and me. Without treatments, without handfuls of medication everyday, without the worry of being hospitalized with every cough.
We would love for you to join our Squadron and FIGHT CF with Sophia and Savannah!! Every person who comes to the walk gives the girls a glimmer of hope for the future. Every dollar donated in their honor helps them know that they are cared about and not alone in this fight. You're generosity gives them extra days to enjoy this beautiful life!!!
Thank you from the bottom of our hearts! Bryan, Jackie, Sophia, Savannah & Truman
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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.