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 7 years old and enjoying 1st grade 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 virtually on Saturday, May 15th! Spread awareness and raise funds.
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 (2021 we will be meeting virtually) 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 (virtually this year but share your outfit in support!!) , get your purple and camo gear on and join Team Princess Warrior on Saturday, May 15th!!
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.