Addressing variability in newborn screening can prevent missed diagnoses and delays in early care intervention.
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I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.
Raising three kids in daycare often involves runny noses and mystery stains. As a mom with CF, I’ve figured out how to balance our daily lives with keeping me healthy and daycare-germ free.
More than 60 teens from across the country — 25 of whom live with cystic fibrosis — participated online and on Capitol Hill in the Foundation’s Teen Advocacy Day to advocate for the CF community.
We’re highlighting six creators who are helping raise awareness of cystic fibrosis. By sharing parts of their life with CF on paper or on screen, they’re voicing the variety of ways that people experience the disease.
I was diagnosed late with cystic fibrosis. When I found out I had bronchiectasis on top of that, I was crushed. However, nine years later, my health is as good as it can be, and I’ve learned the value of fighting back.
Breastfeeding a child comes with a lot of challenges, dedication, and love. Breastfeeding a child with cystic fibrosis brings all of these aspects to a different level. As a first-time mom wanting to breastfeed exclusively, here’s what I have learned while breastfeeding my son, Isaac.
When the pandemic started, I started to feel lost and disconnected. That changed when I was introduced to a new program from the Cystic Fibrosis Foundation that taught me how to share my CF story with confidence.
The Foundation and Bakar Labs will support AVECRIS Pte Ltd and Nosis Biological Sciences as they pursue genetic therapies for cystic fibrosis with their novel technologies.
This year’s awardees showcase the diversity of journeys in the cystic fibrosis community.