We will be participating in the 2024 annual Great Strides Walk for Cystic Fibrosis on May 4. The most recent breakthrough therapy, Trikafta, is still making a difference in the quality of life for many of those with CF. All four of our grands are currently using this therapy. Research continues for new therapies, but focus has ramped up 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 11), Amelie (age 9), Jonah (age 11) and Ellery (age 8) -- who all battle CF every day. 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 if possible, and praying for us as we walk this path. We are so very grateful.
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 in the 40-50's. Of course, we need this to continue to increase and the research funded by the Cystic Fibrosis Foundation is making this a real possibility. Our hope is that within a decade that age may increase to 70's.
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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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.