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If you can get into the study I would go and stay the 2 months in an extended stay apartment or what not. maybe there is a family exchange like penpals you could stay with.

Curious to see how you were able to get kalydeco off label. Does your insurance cover it or do you have to pay out of pocket?

The key that can help is to get desensitize to it in ICU. Also Benedryl to counter the reaction. Zosyn to counter the nausea etc. I get the same reactions to all ab's it is a drag.

dairy free too has helped me along with gluten free. this f-n pseudomonas drags me down too, i hate it it robs us of a normal life. i too deal with the constant cf struggles you cant try to compare you to your boyfriend we all have our own struggles to deal with and all learn at different pace...

yeah this disease sucks when i was 18 i was mad at the world too. wanted to end it and did not care about taking care of my self now i am 42 still fighting and still dealing with stuff with one difference. i made the decision i wanted to live and keep going. without that first step everything...

You need a 3rd party or a non profit to help you promote it. A press release not from you etc. Looks good, good luck with it.

Its not the doc its the insurance companies. If you dont have G155 they wont approve it, well some people with df508 got it through. If you had the cash you could get a script from any doc. But what makes this so sad is that we all should be able to try it to see if it works. My thinking is...

Posting it now as a follow up. Can we make sure we are on track. What is the record of each. Just FYI

Besides revamping your diet the quickest way to stop the congestion is eliminate dairy from your diet. Milk and such is mucogenic. The other thing is gluten. I stuggle too I am gluten free and dairy free and it has made all the difference in my life http://www.greenmedinfo.com I also do the...

look up my almond smoothie and acai smoothie in the nutrtion section - good to drink and good for you.

sorry fo rthe late response i use the ninja blender and the magic bullet. ninja cuts everyting up and the magic bullet makes it very smooth, but if you can only get one get the ninja

Targeting autophagy as a novel strategy for facilitating the therapeutic action of potentiators on ΔF508 cystic fibrosis transmembrane conductance regulator.Luciani A, Villella VR, Esposito S, Gavina M, Russo I, Silano M, Guido S, Pettoello-Mantovani M, Carnuccio R, Scholte B, De Matteis A...

The company screened some 600,000 compounds for ones that would allow ribosomes to make full proteins. Researchers had a ready check in their assay for whether the molecules were making the full-length proteins; they inserted the instructions for the firefly enzyme luciferase into the cells...

Cheung JC, Chiaw PK, Pasyk S, Bear CE Molecular basis for the ATPase activity of CFTR. Archives of biochemistry and biophysics 2008 Aug 1;476(1):95-100 Bompadre SG, Sohma Y, Li M, Hwang TC G551D and G1349D, two CF-associated mutations in the signature sequences of CFTR, exhibit distinct gating...

References: Riordan JR, Rommens JM, Kerem B, Alon N, Rozmahel R, Grzelczak Z, Zielenski J, Lok S, Plavsic N, Chou JL Identification of the cystic fibrosis gene: cloning and characterization of complementary DNA. Science (New York, N.Y.) 1989 Sep 8;245(4922):1066-73 Frizzell RA Functions...

Description: Regulation of CFTR gating (normal and CF) The Cystic fibrosis transmembrane conductance regulator ( CFTR ) is a chloride channel that belongs to the ATP -binding cassette (ABC) superfamily [1]. Mutations in CFTR -encoding gene cause cystic fibrosis (CF), a genetic disease...

Pathway Map Details Regulation of CFTR gating (normal and CF) view in full size | open in MetaCore Object list (links open in MetaCore): PDE4D, SF01 extracellular region, Genistein extracellular region, PKA-reg (cAMP-dependent), PG01 extracellular region, VX770, ATP cytosol...

The CF Foundation helped to fund a Phase II trial of the drug. According to Yerxa, the backing removed a lot of the risk for a small company deciding where to spend limited capital. The beauty of denufosol, Beall says, is its ability to work in any CF patient, regardless of his or her genetic...

The CFTR gene was discovered in 1989, but it took years of research to unravel how it was actually causing the disease. "It wasn't really until we developed the systems that allowed us to understand that these CF patients were missing this thin film of liquid that it really became obvious how...

Breathing Easier Cystic fibrosis patients could soon benefit from breakthrough small-molecule drugs that treat their underlying disease instead of just their symptoms http://pubs.acs.org/cen/coverstory/86/8635cover.html Lisa M. Jarvis ON A TYPICAL school morning, Jeanmarie Youngblood wakes...