HeyJaredA CF Life
My Living with cystic fibrosis podcast features change makers in the CF community: they're scientists, patients and caregivers. Everyone: inspiring.
- Indexed issues, last 90 days
- 9
- Latest publication
- Sep 28, 2026
- Audience
- Checking…
- Earliest in this view
- Jul 6, 2026
Latest issues
"A rare diagnosis can feel isolating, but you are never alone. Community changes everything." the Goldbergs. (opens the original)
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Rare disease connects more people than we realize. While every diagnosis is unique, the journey often includes many of the same challenges: searching for answers, navigating the healthcare system, advocating for better care, managing complex treatments, and finding hope along the way. Cystic fibrosis is considered a rare disease because it affects fewer than 200,000 people in the United States, just like mitochondrial disease. Although these conditions are different, the experiences of patients
CF and sleep: “The most important initial step is to talk with your care team and make them aware there is a sleep problem.” Dr. Kimberly Canter (opens the original)
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Dr. Kimberly Canter talks about CF and sleep and why this discussion will keep you paying attention and wide awake!<img alt="" class="sizing-normal" height="505" src="https://substackcdn.com/image/fetch/$s_!Cwvq!,w_1456,c_limit,f_auto,q_auto:good,fl_progressive:steep
“Hope is not the belief that things will always be easy. Hope is the courage to believe that what we do today can make tomorrow better.” Laura Bonnell (opens the original)
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Hi everyone, The Bonnell Foundation’s mission has always been deeply personal, and this year’s Sweet 16 Night of Hope gala (September 19th) is a powerful reminder of why that work matters.<img alt="" class="sizing-normal" height="807" src="https://substac
CF Without Borders, "When the global CF community works together, everyone benefits." (opens the original)
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Friends for years and with CF as our connection, Petrina and I figured out how to raise CF awareness across the world.<img alt="" class="sizing-normal" height="437" src="https://substackcdn.com/image/fetch/$s_!E51k!,w_1456,c_limit,f_auto,q_auto:good,fl_progressive:st
“Always ask questions, and, so I did.” C.S. Mott Children's Hospital meet and greet. (opens the original)
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If you don’t understand something, ask for more claritificaiton. More than likely, you’re not the only person who might be confused! I attended a fabulous get together of the Mott Campaign Council and Friends gathering several weeks ago. We heard from patients, parents (one Mom standing to the left of me lost her son to cancer) and physicians at the Univeristy of Michigan. They did such a wonderful job of telling their story and why fundraising is critical. <a class="image-link image2 is-viewabl
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