March 2022,
Dear Friends & Family,
Ashley is so much healthier than she was just two years ago! She's a mom to our wonderful grandson, Leo, and she's expecting a second baby in August! Ashley is now able to spend time with family and friends, pursue educational/professional opportunities, and to plan for the future in ways that were unthinkable for her not long ago.
Ashley continues to take Trikafta® the world's first triple-combination CF therapy, with around 90% of the CF population. Following its launch, has been reported that Trikafta® reduces the use of antibiotics, mucous thinners and anti-inflammatory drugs due to overall improvements to patient lung health. As a result, children with CF born today have a more optimistic prognosis than those, like Ashley, born around 30 years ago.
According to the Cystic Fibrosis Foundation (CFF), most CF patients reach adulthood with currently available treatments. The median survival is more than 50 years of age, however this isn't enough! When treatments are priced too high, they contribute to higher insurance premiums, copayments and restrictions on access. Studies have shown that as insurance costs increase, patients may delay care, forego care entirely, or even drop their health insurance. This leads to increased suffering and mortality. We have read stories of CF patients in these exact circumstances. We also hope and pray these efforts will help the US achieve a fairer price for these innovative CF therapies, without putting access to CF families at risk.
It is also critical to continue to develop new and improved treatments for complications from the disease. The CFF is building on the current momentum, funding an innovative research portfolio and collaborating with top scientists from around the world to deliver the next generation of transformative breakthroughs in CF. The CF Foundation spent a total of $218 million dollars on research and development in 2020.
There is still NO CURE for Cystic Fibrosis and 10% of the CF population cannot takeTrikafta®. We want everyone affected by CF to live long and healthy lives. That is why we will not stop raising funds for the Cystic Fibrosis Foundation.
By making a donation you will:
* Provide clinical & scientific research
* Fund drug discovery & development
* Help increase life expectancy of CF patients
* Give CF Centers improved patient care
* Increase the possibility for a CURE for CF!
To quote our grandsons favorite movie :
"Reach for the sky!"
Love, Kathy & Joe
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