We will be participating in the virtual walk for the 2020 annual Great Strides Walk for Cystic Fibrosis, on June 5. It has been an exciting year in CF research. The drug therapy Trikafta was approved in 2019 for the U.S. and has been prescribed accordingly, to those 12 and older. It is being reported as a GAME CHANGER! It is helping to clear the airways like nothing else has done. It is alterating the quality of life for many with CF. Also, we are hearing that the technology for a cure is at hand. We have great hope. The research must continue. We have a Grand plan! Let's get that CURE for our Grands and so many others!
Our team, The Four Leaf Clovers, will walk again this year to honor Elliott (age 7), Amelie (age 5), Jonah (age 7) and Ellery (age 4) -- who all have CF. We love our grands, more than words. The 2020 Walk is even more special as Elliott and Amelie have been chosen to be this years Ambassadors for this area. We want to support the efforts of the Cystic Fibrosis Foundation, and their mission to find new treatments and a cure.
Once a year, we ask those we know to support 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.
Thank you from our hearts for your support,
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.