Florio Family / S2S Squadron ~ Sisters Fighting Cystic Fibrosis
Florio Family / S2S Squadron ~ Sisters Fighting Cystic Fibrosis
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Hi Friend!
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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ATTENDANCE POLICY:
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:
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.