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Top : Personal CF Sites and Stories
CF Resources: Personal CF Sites and Stories
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- Life With Every Breath
- Katherine Russell, author of With Every Breath: stories by and about people living with cystic fibrosis, tracks the progress of her book and life with CF. From traveling to Africa and Europe, to her daily experiences at college, this blog tracks Katherine's developments as a an adult with CF striving to lead a normal life.
Her book can be located on Amazon.com, and all proceeds go to cystic fibrosis.
(Added: 18-Jan-2010 Hits: 160 Rating: 0 ) Rate It
- National Cystic Fibrosis Awareness Committee: Our Family Story
- Six years ago, our son, Phillip, arrived in this world, as seemingly "perfect" as any baby could be. We were elated to have him, as was his big brother, Alex, then 5 years old. Phillip had some difficulty nursing, but this was not worrisome until he was still not eating after 24 hours and began spitting up bile. X-rays showed an intestinal blockage.
At 36 hours old, instead of coming home to his newly decorated nursery, Phillip was undergoing surgery to clear the blockage and explore the damage. . . . As soon as the surgeon discovered the blockage, consisting of thick, tar-like mucus (called meconium ileus), he suspected Cystic Fibrosis (CF). Even before the DNA test results were back from the lab, Phillip was being treated for CF and was out of the hospital in just 2 weeks.
(Added: 17-Dec-2002 Hits: 509 Rating: 0 ) Rate It
- NCFAC: Getting to Know Us
- It is important to put faces and personalities behind the sometimes scary words, Cystic Fibrosis. In this section, we do just that, by offering a space for people to share a bit of themselves and open a window into their world. We would love to add many more faces and stories to this section. Please consider letting us get to meet you.
(Added: 17-Dec-2002 Hits: 438 Rating: 0 ) Rate It
- One Heart At A Time CD
- "One Heart At A Time" is the title of a moving song written for the CF Foundation by award-winning songwriter, Victoria Shaw, and sung in concert by famous artists. More than 200,000 copies of the song have been sold across the country.
(Added: 19-Dec-2002 Hits: 481 Rating: 0 ) Rate It
- Reaching Out CD
- This CD is made up of songs that are written, produced and/or performed by those impacted by CF. For example, "My Love" is performed by the mother of a child with Cystic Fibrosis, "The Friend I Found in You" is performed by a nurse and caregiver for many CF patients and their families, and "My Legacy" is a poem written by a child with CF before her death at age 16.
(Added: 19-Dec-2002 Hits: 498 Rating: 10.00 ) Rate It
- Sandy's Cystic Fibrosis Page
- Description of the characteristics of CF; information on lung transplantation and how to be an organ donor
(Added: 12-Aug-2002 Hits: 411 Rating: 0 ) Rate It
Pages Updated On: 25-Jun-2011 - 13:03:56
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The Cystic Fibrosis-Reaching Out Foundation is a non-profit Foundation under Section 501 (c) 3 of the Internal Revenue Code. Accordingly, the Foundation is not required to pay income taxes. Donors may deduct contributions to the Cystic Fibrosis-Reaching Out Foundation Inc, only to the extent that their contributions are gifts, with no consideration given.
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