Kalydeco Blogs

Kalydeco Blogs from Australia:

CF Mudda
Kalydeco for Australians
My Little Blue Guy
The Breathing is Easy

Kalydeco Blogs from the UK:

A Sprogs Life
Brilliant Blue K
CF Chez
Cocktails and Creon
Songs from the Id

Kalydeco Blogs from the US:

Lets Rock CF
Lily’s Miracle
Lucky CF Mom
Treating CF Naturally

How I Live Laugh Love With CF

Kalydeco Blogs with Residual Function Mutations:

Marci (R117H & F508del)
Karen (3272-26A>G & F508del)

Kalydeco Blogs with Class 1 Splicing Mutations:

Savannah (621+1G>T & F508del)
Salty Spark (621+1G>T & F508del)
Lezly (1717-1G>A & F508del)

Kalydeco / VX809 Trial Blog:
Colin (F508del homozygote)


One thought on “Kalydeco Blogs

    Frank Elliott said:
    December 25, 2013 at 8:13 pm

    Wow you have really put together a very useful list of blogs here. Also your other posts would be very important for CFS patients all over the world. You seem to have a very good understanding of what is going on with Kalydeco and what kinds of trials are occurring. Also your knowledge of the mutations is impressive. What has been hard for me to figure out is what are gating and splicing mutations. I found a pretty good blog post that got into it some. Here’s that link: https://magicbluepill.wordpress.com/kalydeco-with-other-mutations/

    Now I realize it’s yours. But I hadn’t pulled that all together this afternoon. What I understand from the 2nd and 3rd charts in the first section of the article above is that Kalydeco helped the patients involved tremendously. This was very impressive. And even if the very most recent trial reported on about six days ago was not a total success, it worked very well and had significant results for 18 year olds on up. However the results were in the right direction and suggestive for the younger groups. A larger group of that younger age group in a trial probably would have been significant. Thanks again for all your work. What you have done in gathering this all together and making sense of it needs to get out to a much wider group of patients.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s