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Wanted to share this information for those expecting with CF prenatal diagnosis or possibility. It explains a theory and some research that DHA and GSH may help prevent meconium ileus. Obviously not conclusive but DHA is pretty common and you can get scripted prenatal vitmins that have a DHA...

Had quarterly CF appointment a week ago and after reviewing DS's meds which included Culturelle, the dietitian asked if DS had a port. I said no and she explained at the recent CF conference they discussed CFers getting port infections from adding probiotic powder into the port (if I understood...

I know we often say you can have a negative sweat test and still have cf and have noted several here have had that happen and have recommended posters to push doctors for genetic tests when cf symptoms but negative sweat test. But it sounds like the doctors don't buy it...well in searching for...

http://www.bizjournals.com/boston/blog/bioflash/2015/11/how-a-500k-contract-turned-vertex-into-a-30.html?ana=yahoo

So a couple weeks past when getting a new delivery of drink supplement the coordinator discovered that there was a recall covering the product we had, but thankfully it wasn't the lot we had at home. From our discussion it sounded like medical supplies etc are usually handled from the suppliers...

Was checking to see if next generation details were at clinicaltrials.gov and didn't find but discovered this study, which I hadn't been aware of: https://clinicaltrials.gov/ct2/show/NCT02508207?term=phase+2+extrapulmonary&rank=1 It is a small study for 661/Kalydeco, not the Phase 3 for...

http://www.sciencedirect.com/science/article/pii/S2352396415301109 cystemine is fda approved and available for another condition. While early on study, if nothing is working this might be worth a shot.

Vertex had a conference yesterday to discuss earnings. http://seekingalpha.com/article/3617286-vertex-pharmaceuticals-vrtx-jeffrey-m-leiden-on-q3-2015-results-earnings-call-transcript That is the transcript. Note: This was held for investors but it is public so anyone can hear. I've been...

So been researching toothpaste brands and wonder if anyone had any input from the dentist or CF doctor related to CF issues? For instance the ingredient triclosan which inhibits bacterial growth but some studies indicate could make resistant to bacteria? What about baking soda once (for a...

http://investors.vrtx.com/releasedetail.cfm?ReleaseID=938302 this is huge! I've mentioned before out crisp and gene splicing and that they are working with vertex will get t den much faster I think because vertex knows the gene aspect and has the assay to test...likely ten years out but closer...

So I homeschool, DS who is 6. He had his weekly spelling test this am and I suggested during his morning homework period he might want to review his words he said no, he didn't need to. I got everything ready and then had to do something in the kitchen and said you can take another look at the...

So DS doctor wants to up his qvar or rather has. She gave us the choice of a higher dose 1 a day or same dose 2 a day. I asked adv and disadvantages and whether better to do 2 a day which seems intuitively like t would be better but she said it s no different. Bu what I wonder is is that a...

Just seeing how this works

Another company, Galapagos, is moving forward with a second generation one. Slide 11 for Vertex shows 4x improvement over the combo (661/Kalydeco), while this in vitro shows a 6x improvement over Orcambi (which has equivalent cftr improvement to 661/kalydeco). So many things coming...

I know I'm tracking carefully what people are saying about Orkambi and specifically the FEV improvement. The Vertex conference noted one of the presentations at the NACFC which showed that there was no correlation between the FEV improvement at a specific point and reduced excerbations. In...

I'm in tears watching the slides. The 3 drugs combo gets in vitro CFTR function to 75% function. Orkambi only to 25%. Kalydeco...that miracle for 551...only got CFTR function to 50%. And for heterozygotes to almost 50%, which again is what Kalydeco did for 551! vrtx.com has link if you...

I they broadcast some of the sessions, but anyone know whose posting updates/slides/summarizes live of the NACFC??

Just released: http://investors.vrtx.com/releasedetail.cfm?ReleaseID=935806 Second generation correctors in healthy volunteers next month. 2016 in trials with triple combo for both ddf508 and heteros df508!!!

Okay,I'm trying to do 10 things and maybe I'm not reading this right, but I think Vertex has just submitted sNDA for RESIDUAL FUNCTION for Kalydeco. http://investors.vrtx.com/releasedetail.cfm?ReleaseID=935666 Autumn: YOUR'S IS LISTED!!! (based on your profile!!) Off label now!!!

https://arc.nacfconference.org/cff/live/14 Some live sessions on line