As you may know, I serve on the committee for the 65 Roses Golf Classic, an event that raises important funds toward a cure for the brutal disease Cystic Fibrosis. Our committee chairs, Betsy & Charlie Nettles and Sharon & Jason DeLorenzo have children with cystic fibrosis so the effort hits close to home and has made the journey that much more memorable.
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 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.
Each day, we get closer to a world in which every person with CF can make plans for the future that do not revolve around CF. Thank you for your consideration!