As you know, our youngest daughter, Paige, was diagnosed with cystic fibrosis nine years ago. Since then, we have been incredibly blessed that Paige has benefited from breakthrough drugs that the CF Foundation helped develop.
Betsy and I, along with Sharon and Jason DeLorenzo, co-chair the 65 Roses Golf Classic, an event that raises important funds toward a cure for this devastating disease. Last October, the FDA approved a highly effective therapy, Trikafta, that addresses the underlying cause of cystic fibrosis for more than 90 percent of all people with the disease. It’s a tremendous milestone and one we couldn’t have imagined when this event began in 2012.
This revolutionary breakthrough has already begun to redefine what it means to have cystic fibrosis. For Sophia and Jack, this means weight gain, normal ranges of lung function and even discussions with medical teams regarding the elimination of drugs and treatments they have been on the majority of their lives. Paige anticipates starting Trikafta in the coming weeks and is looking forward to the same astonishing results.
While a new treatment for cystic fibrosis is life altering, our goal is to actually end cystic fibrosis. Although there will be many hurdles, with time and continued effort, the CF Foundation believes we will see a permanent, one-time cure at the cellular level in our lifetimes. Until this pivotal moment occurs, we will continue to pray and work toward this ultimate goal.
We hope you will join us on our journey to put an end to cystic fibrosis by donating $50, $100 or whatever amount you choose. Every dollar is greatly appreciated, fully tax deductible and will help us in this fight to cure cystic fibrosis.
To donate, please click the “ DONATE ” button.
Thank you for helping us make CF stand for Cure Found.
Charlie and Betsy