Life isn't always full of happy moments. Some are heartbreaking and some are crushing. But through it all, the life Kari and I shared together were the happiest moments of my life. I wouldn't trade them for anything. They were worth every second.
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Starting at 6 months of age, I began my daily journey battling my chronic illness, cystic fibrosis. And now, at 28, my heart is heavy because one of my nearest and dearest caregivers passed away unexpectedly … my father.
When I decided to study abroad in 1974, I also decided that I would not allow CF to stop me from living my life to the fullest.
As I join the Foundation as chief operating officer, I look forward to taking the time to hear as many community voices as I can, to learn from all you have done and to engage to help do my part.
This year at the 30th Annual North American Cystic Fibrosis Conference in Orlando we have three sessions just for the online cystic fibrosis community.
For those of us without a medication that targets our cystic fibrosis mutation, it's important to remember that our life with CF is a marathon.
Being a part of the CF Foundation has given me so much more than I could have ever imagined. That is why my wife, Nanette, and I have made a commitment to people with cystic fibrosis for years to come by making a legacy gift, an enduring statement of our values.
Each time we meet, I am reminded that quality improvement in CF care cannot happen without the insights of people with CF and their families.
My oldest son, Nathan, was 18 years old when he was finally diagnosed with cystic fibrosis. While we both had been waiting a long time to get an answer to what had been plaguing him, I'd been hoping and praying that he'd escape the CF sentence. The diagnosis, however, did not come as a surprise because exactly 35 days earlier, my younger son, Caleb, at 14 years, had already been diagnosed with CF.
Today, the U.S. Senate released its version of the health care reform bill, titled the Better Care Reconciliation Act, and in response, the Cystic Fibrosis Foundation affirmed its opposition to the legislation.