When the Cystic Fibrosis Foundation was established in 1955, children with CF rarely lived long enough to attend elementary school. Due in large part to the Foundation's aggressive investments in innovative research and comprehensive care, many people with the disease are now living into their 30s, 40s and beyond.
-Cystic Fibrosis is a fatal genetic disease that affects the respiratory, digestive and reproductive system -About 1,000 new cases of CF are diagnosed each year -An estimated 30,000 children and adults in the US have CF -The average median survival age is now between 31 and 41
Meet Jadzia Ruth – Little Miss Jadzia is growing into a beautiful young girl. She's smart and funny. Loves to sing and dance. She runs, jumps, climbs, she loves sparkles, the color pink (and rainbows!) and dresses. She is sweet and caring. She's a fighter! She is 6 years old and enjoying Kindergarten and learning how to read and write.
She appears to be healthy, but her body produces excess mucus that clogs her lungs and digestive system-making it difficult to breathe and digest food. Due to having CF, the lungs may also deteriorate over time due to scar tissues, mucus, etc. Thanks to the CF Foundation and for everyone who has raised awareness and funds, Jadzia has been on a CF medication called Orkambi since 2019. This medication we have noticed a HUGE decrease in mucus in the morning when she wakes up. She even has been asking us, “What’s that smell???” after cooking meals. This tells us that perhaps her sinuses were clogged up and it’s clearer now and we didn’t even know!
She takes about 18 pills a day to help digest and absorb the nutrients in foods along with other vitamins and supplements and medications.
On normal healthy days, she spends around 1 hour on a nebulizer and chest physical therapy vest. This therapy increases if she is sick and we up it to about 4 hours a day total. It can be exhausting trying to keep up with everything but we don’t give up! A common cold and a cough can end up in hospitalization for a Cystic Fibrosis patient.
A fun fact: Jadzia means “Female Warrior”. Only God knew that name fit PERFECTLY for this precious girl.
Please support/join our Team Princess Warrior fundraising event and help add more tomorrows!!
How can I do that??? See a few options below! 1) Donate to one of the Team Members (ANY dollar amount makes a difference)
2) Become a member of our team and walk with us on Saturday, May 2nd! Spread awareness and raise funds. Earn some prizes, eat yummy foods, play games, etc. Having family and friends walk with us means more than you know. ♥
3) Sign up and become a virtual walker (meaning you don't have to be there physically at the walk), Spread awareness and help raise funds for our whole team!
The Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families. Our friends and family are joining together to fight Cystic Fibrosis and find a cure. The Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF through research and ground breaking new medications.
Please also watch this great video that helps explain what Cystic Fibrosis is.
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To learn more about CF and the CF Foundation, please visit www.cff.org.
Together, we can make a difference in the lives of those with CF! Thank you for supporting the mission of the CF Foundation and GREAT STRIDES.
For those joining our walk in person, get your purple and camo gear on and join Team Princess Warrior on Saturday, May 2nd!!!
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.