R117H Kalydeco Study needs participants!

[robinsylvester]

My daughter has CF. One of her mutations is R117H. Her CF doctor informed me that there are not enough participants for the R117H study for Kalydeco. If there are not enough participants, the study will not go forward, the FDA will not approve Kalydeco for the R117H mutation and CFers with this mutation will not be able to take it. Please, if you have the R117H mutation and want to participate in the study call your pulmonary/CF doctor or clinic and find out how to participate as soon as possible. Thank you so much. (L)

 

[Guest]

Hi Robinsylvester,

I have some information for you.............in fact I know of someone who is receiving Kalydeco for this mutation R117H and in fact her insurance is paying for the medicine!!!!!!!!!!!!!!!!!!! The way I discovered this individual is through a blogger website. She is doing amazing while on this. Her sweat test is normal now as in salt levels decreased dramatically Her lung functions have also improved and she has been out of the hospital for a while! i will try to message you through this forum. this is my first use at this. I also have a blog if you are interested in reading my CF life.

http://livingmydreamswithcf.blogspot.com/

John