We will be participating in the 2023 annual Great Strides Walk for Cystic Fibrosis on May 6. Research and therapy advances continue. The newest therapy, Trikafta has been reported as a GAME CHANGER! It is helping to clear the airways like nothing else has done. It is changing the quality of life for many with CF. Two of our grands have benefitted from this new therapy and the other two may be starting it soon. Research for therapies continue, and more than that, research for a cure! It is more hopeful than ever. We pray for that CURE every day, for our Grands and so many others!
Our team, The Four Leaf Clovers, will participate again this year to honor Elliott (age 10), Amelie (age 8), Jonah (age 10) and Ellery (age 7) -- who all have CF. We love our grands more than words. We want to support the efforts of the Cystic Fibrosis Foundation, and their mission to find new treatments and a cure.
We are asking for your support of our family and all of those who battle this disease by giving a donation to the Great Strides Walk/Cystic Fibrosis Foundation. We welcome and appreciate any support you can give -- keeping us in your thoughts or prayers, helping us reach our fundraising goal with a donation of any amount (it all adds up), or joining our team.
Please help us in raising awareness and if possible making a donation. We need that CURE!
Inhale Courage, Exhale Fear.
Our Heartfelt Thanks,
Diane and Rudy
Cystic Fibrosis (CF) Quick Facts
In the 1950s those with CF often didn't survive to get to elementary school. Current median predicted age of survival is late 30s - early 40s. Of course we need this to continue to increase and the research funded by the Cystic Fibrosis Foundation is making this a real possibility.
Cystic fibrosis is a life-threating disease that primarily affects the lungs and digestive system. The thick mucus it produces can adversely affect many organ systems.
- Mucus can clog the lungs making it difficult to breathe. The thick mucus also traps bacteria in the airways, which often leads to severe lung damage. Respiratory problems are the most serious complication for people with CF.
- In the pancreas, the buildup of mucus prevents the release of digestive enzymes that help the body break down food and absorb important nutrients. People with CF often have malnutrition and poor growth. They often need to take enzymes and require twice as many calories. Scarring of the pancreas can also lead to diabetes.
- In the liver, thick mucus can obstruct bile ducts, which can lead to cirrhosis.
- Most males with CF cannot have children and for females reproduction is very difficult.
Both parents must be carriers of the CF gene to have a child with CF. When both parents are carriers, the chances are:
- 25% that the child will have CF
- 50% that the child will be a carrier and will not have CF
- 25% that the child will not inherit either CF gene.
Currently there is no cure for CF. There is a drug that was recently approved that targets the underlying cause of CF for a small number of people with a specific mutation of the CF gene. More treatments like this are currently being studied. All CF therapies available today just treat the symptoms of CF.
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Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
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