Social Issues
Yes… I’m staring… at your feeding pump!
Posted on February 25, 2008. Filed under: Caregiver Support, Living in Chronicity, Nutrition, Social Issues, caregiver | Tags: feeding pump, moms, signing time, special needs, staring, TPN |
It was near the end of last summer when I took my girls to see a live Signing Time show at a local school theater. Having been long time fans of Rachel and the amazing work she does for the hearing impaired, I made sure we got there early and got a front row seat… [...]
Read Full Post | Make a Comment ( None so far )As if we needed more proof…
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. [...]
Must be doing something right…
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 [...]
Sixtyfive Roses ~ The Book: A Sister’s Memoir
Posted on January 8, 2008. Filed under: Books, Caregiver Support, Living in Chronicity, Social Issues |
For those not in the “know” ~ “sixtyfive roses” is often what little kids call their disease when they find “cystic fibrosis” too cumbersome to pronounce. The term was coined by the Foundation and has been used for decades, citing this story about a CF mom and her young son.
I just completed reading Sixtyfive [...]
