Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
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.
Protecting your children with CF, at all costs, sounds like a loving thing to do until you consider what it may cost them. To keep a balance between their health and healthy childhood development, my husband and I have learned that it takes a prudent approach with careful and creative decision making.
With a record 45 clinical trials either ongoing or starting up in 2016, research coordinators and principal investigators throughout the Therapeutics Development Network took time out in San Antonio recently to discuss clinical research and put attendees through boot camp.
PTC Therapeutics has discontinued development of ataluren as a potential treatment for people with cystic fibrosis caused by a nonsense mutation. The Cystic Fibrosis Foundation is supporting efforts to pursue treatments for people with CF who have a nonsense, splicing or other rare mutations.
Dr. Skach discusses the latest advances in CF research and exciting new approaches to address the underlying cause of the disease.
Hear from John P. Clancy, M.D., the first plenary speaker at this year's NACFC, about recent advances in personalized medicine, which could allow clinicians to better tailor treatment to the individual with CF.
The Foundation hosted a small conference that brought together CF scientists, clinical researchers, and biotechnology and pharmaceutical industry representatives. Learn more and watch a short video of attendees sharing their thoughts about the progress we are making in CF research.
As a CF mom, I'm always in a state of wonder about whether the choices I'm making are the right ones for my son with CF and the rest of the family.