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Sparks with Salt

Monday, May 21, 2012. According to the FDA commisoner: there is no FDA law keeping these patients from receiving these drugs following Phase II trials! VERTEX has complete control and authority to allow these patients access to these drugs. Now, keep in mind, that is not all of us, but can we not agree that our community should stand behind these patients who are agreeing to take these drugs! And, Finally. Do you know how powerful our words are? That is what drove us to the announcement". To all those wh...

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Sparks with Salt | saltyspark.blogspot.com Reviews

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Monday, May 21, 2012. According to the FDA commisoner: there is no FDA law keeping these patients from receiving these drugs following Phase II trials! VERTEX has complete control and authority to allow these patients access to these drugs. Now, keep in mind, that is not all of us, but can we not agree that our community should stand behind these patients who are agreeing to take these drugs! And, Finally. Do you know how powerful our words are? That is what drove us to the announcement. To all those wh...

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1 sparks with salt

2 rally the troops

3 hi everyone

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6 salty spark

7 no comments

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Sparks with Salt | saltyspark.blogspot.com Reviews

https://saltyspark.blogspot.com

Monday, May 21, 2012. According to the FDA commisoner: there is no FDA law keeping these patients from receiving these drugs following Phase II trials! VERTEX has complete control and authority to allow these patients access to these drugs. Now, keep in mind, that is not all of us, but can we not agree that our community should stand behind these patients who are agreeing to take these drugs! And, Finally. Do you know how powerful our words are? That is what drove us to the announcement". To all those wh...

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saltyspark.blogspot.com

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Sparks with Salt: Getting a script for Kalydeco off-label

http://saltyspark.blogspot.com/2012/03/getting-script-for-kalydeco-off-label.html

Monday, March 19, 2012. Getting a script for Kalydeco off-label. I just called Vertex to speak with them about doctor's prescribing Kalydeco off-label. Here is what I learned. However, I was informed that if your doc thinks it is an important drug to try and might be helpful, they are absoltuely allowed to prescribe it off-label. At that point, your pharmacy will do what it can to get the drug covered by insurance. If your clinic has a problem with that, have them call this number at vertex:. Just so Im ...

2

Sparks with Salt: RALLY THE TROOPS!!!

http://saltyspark.blogspot.com/2012/05/rally-troops.html

Monday, May 21, 2012. According to the FDA commisoner: there is no FDA law keeping these patients from receiving these drugs following Phase II trials! VERTEX has complete control and authority to allow these patients access to these drugs. Now, keep in mind, that is not all of us, but can we not agree that our community should stand behind these patients who are agreeing to take these drugs! And, Finally. Do you know how powerful our words are? That is what drove us to the announcement".

3

Sparks with Salt: May 2012

http://saltyspark.blogspot.com/2012_05_01_archive.html

Monday, May 21, 2012. According to the FDA commisoner: there is no FDA law keeping these patients from receiving these drugs following Phase II trials! VERTEX has complete control and authority to allow these patients access to these drugs. Now, keep in mind, that is not all of us, but can we not agree that our community should stand behind these patients who are agreeing to take these drugs! And, Finally. Do you know how powerful our words are? That is what drove us to the announcement". To all those wh...

4

Sparks with Salt: Kalydeco for Class I and Class II

http://saltyspark.blogspot.com/2012/03/kalydeco-for-class-i-and-class-ii.html

Monday, March 19, 2012. Kalydeco for Class I and Class II. I have been keeping this info to myself because I didn't want to have a lot of "pressure" trying this new drug.and I really wanted to be able to keep a level head about improvements or no improvements.because, believe me, I really want to see improvements. I am Df508/621 1G- T. I started on February 24 in the morning. February 24, 2012 FEV1.1.31. March 2, 2012 FEV1.1.48 (before morning treatment.holy! Felt lousy and coughed up some very old crap ...

5

Sparks with Salt: Where I've been...

http://saltyspark.blogspot.com/2012/05/where-ive-been.html

Wednesday, May 9, 2012. To all those who are following my two previous posts with great interest, I am so sorry.life has gotten a little bit complicated. I am praying that somewhere they will do a trial for those of us with these splice site mutations. There are three of us (that I know of) who have splice site mutations and have had significant improvements with Kalydeco. by significant I mean 10% to 15% increase in FEV1. ugh.why is it taking so long? May 9, 2012 at 8:08 PM. Thanks for the update, Mandy!

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noexcusesnoexcuses.blogspot.com

NoExcuses: April 2012

http://noexcusesnoexcuses.blogspot.com/2012_04_01_archive.html

The blog for CFer's who wish to be proactive, and not reactive, about their health. We are here to extend our lives by THINKING DIFFERENT. Saturday, April 14, 2012. 5 weeks of Kalydeco. So I have now been on Kalydeco for 5 weeks. For those who don't know me, I do NOT have G551D nor do I have any sort of gating mutation. Diet, exercise, modifier genes all have an impact on how CFTR functions. 2 weeks in to taking Kalydeco, using my home FEV1 monitor, my FEV1 went up to 2.56. This was prior to taki...EDITE...

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Monday, May 21, 2012. According to the FDA commisoner: there is no FDA law keeping these patients from receiving these drugs following Phase II trials! VERTEX has complete control and authority to allow these patients access to these drugs. Now, keep in mind, that is not all of us, but can we not agree that our community should stand behind these patients who are agreeing to take these drugs! And, Finally. Do you know how powerful our words are? That is what drove us to the announcement". To all those wh...

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