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.
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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.
As someone with cystic fibrosis, I struggled with the fact that I might be a burden to those who helped care for me. Things changed when I married Ramón and learned the true meaning of caregiving.
After two kidney transplants and one double-lung transplant, I am currently doing dialysis treatments as I wait for my third kidney transplant. Keeping a positive attitude and having friends and colleagues who support me have helped me adjust to life on dialysis.
Today, there are close to 40,000 people in the United States with CF due in large part to more people living longer into adulthood, signaling a shift in what it means to live with CF in the modern era.
I was diagnosed with stage IV colon cancer. After one year, I’m still fighting a tiring battle with it and cystic fibrosis, but I won’t quit.
I was not emotionally prepared the first time I saw my daughter in her vest. But now, I am thankful to have this device as a part of our daily routine to keep her lungs healthy.
The cystic fibrosis care model is evolving to support people living longer with CF and their increasingly diverse health needs. Catalyzed by the approval of Trikafta® and the COVID-19 pandemic, this adaptive and personalized care model encompasses novel ways to connect clinicians and patients.
I asked the Cystic Fibrosis Foundation’s Dr. Whitney Brown about how cystic fibrosis care might change as the CF population grows, lives longer.