Learn how Rachel Kinney fits studying for a computer science major, an active social calendar and daily cystic fibrosis treatments into her life.
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Our next “Living Today” video features Jordan Scott, 22, whose biggest challenge involves gaining weight. But through her love of studying nutrition, she's been able to overcome her fear of the inevitable: a feeding tube.
CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
No matter how good your school district is, be prepared for unexpected challenges when getting your 504 plan in place.
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
Last August, I watched all of my friends head off to school and all of a sudden I was the only one left still living at home. I hadn't even graduated high school, but I was getting to experience the time-honored and popular British tradition of a taking a gap year.
Sending our son to school was scary, but we have a plan to keep him healthy.
If your child has cystic fibrosis, chances are you have some concerns about school fitness activities like physical education classes or school sports teams. Even though some people with CF have trouble breathing and tire easily, exercise can be especially important.
Nationwide Effort to Instill Best Practices for Cystic Fibrosis Care is Honored for Excellence