Site Search

When I was growing up, having a positive cystic fibrosis diagnosis did not automatically mean that I got the care and treatments I needed. It wasn't until my 22nd birthday, when I was in poor health, that I decided I needed to get healthy and speak out for myself.

If you're the parent of a child with cystic fibrosis, you probably know the worry that comes along with sending your kid away to summer camp. To ensure that my own kids with CF were cared for at camp, I wrote the following letter outlining their special medical needs.

Ten patient and provider groups, representing millions of Americans, issued the following statement in response to the release of the nonpartisan Congressional Budget Office's (CBO) scores of two pieces of health care reform legislation currently being considered by the U.S. Senate.

Cost effectiveness analysis must be used carefully and as part of a comprehensive evaluation of the value a treatment, such as highly effective modulators, provide to people living with cystic fibrosis.

Parents of teens with CF often ask what they can do to help their child who is struggling to come to grips with their disease or is simply going through a rough patch. Here's some of my best advice.

CF Foundation's $1 Million Investment Helped Drug Known as Cayston® Become a Reality

Like many of my millennial compatriots, I was booted from my parents' health plan when I turned 26. While my friends were shrugging health insurance off as just another growing pain of their 20s, I was panicking. 

As parents of kids with CF, we can make a life-transforming difference by focusing as much on their mental health as we do on their physical health. If you think your child's CF is taking an emotional toll, asking yourself these questions may help.

Academy Award-Winning Movie Director and Oklahoma Native Join the Cystic Fibrosis Foundation to Fight Fatal Disease

Looking back at my freshman year, I realize that putting college before my CF wasn't the first thing I had all wrong.