Put your legislators on your team!

by: Peter S. Barnett PT, DPT, OCS In the USA… Do you know who your lawmakers are? To anyone who has an illness, and especially families dealing with Cystic Fibrosis; it matters that you know your lawmakers. Everything (Medicare/Medicaid/SSDI, Commercial Insurance, Premium Rates etc) about healthcare is connected to politicians. …


Surprising Benefits from CF Research

CF Research May Help Agriculture Cystic Fibrosis is often referred to as an orphan disease i.e. research benefits a relatively small portion of the general population. But here is a serendipitous situation in which CF research may help agriculture on a large scale. A graduate student at the University of …


What is an Anti-Inflammatory Diet?

From left to right: onion, ginger, garlic, fresh turmeric Anti-inflammatory foods are often discussed by people with chronic inflammatory diseases. Cystic Fibrosis has associated inflammatory responses, which brings the question of how beneficial an anti-inflammatory diet could be as part of the Cystic Fibrosis diet? What foods are helpful? What studies are behind …


It’s Been a Good Life Dad: My Son’s Struggle with Cystic Fibrosis

It’s Been a Good Life Dad: My Son’s Struggle with Cystic Fibrosis by Jerry E. Hendon Author Jerry Hendon writes: I have written a book about my son, Kevin, who died of cystic fibrosis in 1986 at age 18. The book, It’s Been a Good Life, Dad: My Son’s Struggle …

3-d ears

3D Printed Ear, Bone, and Muscle Tissue

It sounds like science fiction, but it’s not: 3D-printed human ear, bone, and muscle tissue have been implanted in lab rats and successfully grew their own blood vessel networks. We’ve been hearing about this for a few years now: different groups of researchers working on 3D-printing processes and materials that …


Financial: Your Questions from the 2015 Survey

Your Financial Questions From Our Survey in April 2015   How can you lower our out of pocket expenses in medications? Where else can we find financial help for the high cost of copays? Where can I get help with expenses? The high cost of medicines and machines need to …


Dr. Warren Warwick, The Bell Curve

The Bell Curve Dr. Warwick has made a study of what it takes to do better than everyone else.  He will be missed by the CF Community! What happens when patients find out how good their doctors really are? BY ATUL GAWANDE Every illness is a story, and Annie Page’s …


UCSD’s 3D Printed Liver Cells Most Liver-like Yet

3 D Printed Liver Image from Feb 9, 2016 Home to the original bioprinting firm, Organovo, San Diego is, apparently, a hotbed of bioprinting activity.  Or, at the very least, the University of California, San Diego is make its own strides in the field of bioprinted liver tissue.  Published …


Enzymes – Frequently Asked Questions

Newly Diagnosed/Infancy The doctors want me to give the enzymes to my baby in food but he’s only a week old? I thought we weren’t supposed to give solids that early. My baby nurses by grazing. When do I give more enzymes? I’m supposed to give ½ an enzyme. How …

bubby's enzymes

Toddler Bubby, taking enzymes for Cystic Fibrosis treatment

80%-90% of people with Cystic Fibrosis need to take enzyme capsules before they eat, as part of their Cystic Fibrosis treatment. In Cystic Fibrosis, as the lungs produce thick, sticky mucus, the pancreas also makes the same type of mucus that blocks the release of enzymes needed for digestion. When …