There was a clear message in today's second plenary at NACFC: no matter what role you play -- physician, scientist, person living with CF, parent, fundraiser, regulator -- it is going to take a tremendous team effort to advance new therapies as fast as possible and eventually find a cure for CF.
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For three years, the Adult Advisory Council has been leading the way in helping the Cystic Fibrosis Foundation reach out to adults with CF. Our work as a council led to the formation of the Community Partnerships department at the Foundation and a formalized Peer-to-Peer Mentoring Program, which is being piloted in 12 CF care centers, with more to come.
Before I had my son, I had organized my life in such a way that everything flowed in orchestrated harmony. But I found that as he grew I allowed his needs to eclipse my own, and my life soon fell out of balance.
As our country prepares for the transition to a new presidential administration and congressional session, the CF Foundation is hard at work to understand what the changes in our political leadership mean for people with cystic fibrosis. Our interest is in supporting you.
When you have cystic fibrosis, the people in your life are heavily impacted by what you go through. And this love isn't limited to a companion or partner, but shines through friends, parents, siblings and caregivers.
Having cystic fibrosis can be a full-time job -- especially when you already have one. Here are some of my tips for managing work, life and a busy schedule with CF.
After turning 60, I decided to mark the milestone by creating a “living list,” 60 things I could do to raise awareness and money for cystic fibrosis care.
With the holidays fast approaching, it's time to prepare for the change of schedule in your cystic fibrosis routine.
Growing up, I never had any doubts that I would one day go off to college and pursue a career, despite having cystic fibrosis. But when the time came to prepare to attend Marquette University and live on my own in Milwaukee, I knew I would need a plan in order to make my transition to college life as smooth as possible.
I started “striding” in 2011 and have made it a goal to participate every year. Here are the top five reasons why I stride and think others should too: