cystic fibrosis
Posted on February 15, 2008. Filed under: Fundraising Ideas in General, Local Fundraisers, The Science, cystic fibrosis | Tags: clinical trial, cystic fibrosis, cystic fibrosis foundation, denufosol, Great Strides, ptc124 |
Denufosol… the next miracle drug?
Let’s hope so!
There’s been a lot of buzz about the promise of this exciting drug to enter the realm of cystic fibrosis treatments. As it enters its second Phase III trial, the excitement is palpable. Will this change the future of the cystic fibrosis in our youngest population, potentially [...]
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Posted on February 5, 2008. Filed under: Living in Chronicity, Social Issues, The Science, cystic fibrosis | Tags: cystic fibrosis, Living in Chronicity, smoking |
Secondhand smoke is deadly. Dangerous. Downright dirty. So what’s the news? Check out this JAMA abstract to see the facts of the effects of secondhand smoke on those with CF. Another article here.
For those living with cystic fibrosis (or other lung diseases, for that matter), secondhand smoke is, essentially, the devil. [...]
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Posted on January 31, 2008. Filed under: Caregiver Support, Living in Chronicity, cystic fibrosis | Tags: cystic fibrosis, faith, lung transplant, prematurity |
…on my heart and in my mind Tricia, Nate and Gwyneth. You’ll remember a few posts back when I posted “To be in Love…” about Tricia’s journey toward a double lung transplant was suddenly halted when they discovered that they were pregnant with Gwyneth. I have seen many miracles in the [...]
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Posted on January 31, 2008. Filed under: Caregiver Support, Living in Chronicity, Raising the Bar for CF Care, cystic fibrosis | Tags: cystic fibrosis, hospital, iv antibiotics, travel |
… or not? That was the question.
When you “live in chronicity” (or parent someone who does), you exist somewhere between those people who can make plans and keep them and those forced to mark every “commitment” down in pencil. For example, I recently took a trip out West to visit another CF care [...]
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Posted on January 30, 2008. Filed under: Raising the Bar for CF Care, Social Issues, The Science, cystic fibrosis | Tags: Advocacy, CFF, Cure, Cytic Fibrosis |
These are exciting times indeed!
The CFF wins again… sort of. It’s no small feat for the Cystic Fibrosis Foundation’s care center network to be recognized by The National Institutes of Health as a model for the delivery of care for those with a chronic disease. Even more surprising for some was the bold [...]
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Posted on January 11, 2008. Filed under: Nutrition, cystic fibrosis | Tags: calories, cystic fibrosis, Nutrition, weight |
Did you realize that for most people living with CF, gaining weight is a tremendous struggle? Many of us complain about having to lose weight, reduce our food intake and watch what we eat to be healthier… can you imagine the if the opposite were true? Sure, it sounds tempting initially ~ to [...]
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