As Congress weighs budget appropriations, we look at long-term funding for the National Institutes of Health. We decided to sit down with the Foundation's senior vice president of research affairs to learn more about why the work being done at NIH is so important in the search for a cure for CF and other serious, rare diseases.
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Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.
Everyone with cystic fibrosis faces the fear that their next infection could be the one that doesn't respond to treatments. Chronic infections eventually led to my sister's death. After seeing what she went through, it became clear to me that we have an immediate need for better anti-infectives.
In January, I underwent successful phage therapy -- an experimental treatment in which viruses are used to kill difficult-to-treat bacteria. To get a better sense of the future of this potential treatment option for other people with CF, I chatted with the head of the Infection Research Initiative at the Cystic Fibrosis Foundation.
Adjusting to life after my newly adopted son’s cystic fibrosis diagnosis has been challenging at times, but I will do all I can to support and advocate for him.
My son who has cystic fibrosis required extensive treatment as a toddler, which I believe had a traumatic effect on his mental health. With the help of therapy, I have helped him learn how to self-advocate and use coping strategies for his anxiety, starting when he was just 4 years old.
Although it's painful, my commitment to the military in Afghanistan will help me honor my commitment to keeping my son, Cohen -- and the rest of my kids -- healthy.
I love being outside during the summer, but I make sure I have plenty of fluids and sunscreen around. Here are my top five tips to stay active and healthy this summer.
As the parent of children with cystic fibrosis, it can be challenging to know where to turn when they experience unfamiliar health issues. Here are six things I've learned from working with our CF care team and our pediatrician to keep my kids healthy.
Growing up with cystic fibrosis, my parents always encouraged me to take responsibility and be open and honest about my disease. That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road.