About Me

If you are here checking this out leave me a comment, I'd love to hear from you. I was diagnosed with CF at 21 years of age after battling stomach and respiratory problems throughout my childhood. My mutations are E60X and P67L the later being the one that is excessively rare, seems to take credit for my so far milder progression, and qualified me for the study. I feel incredibly Blessed to be as healthy as I am so far and to be receiving this opportunity to give back to the CF community.

January 14, 2013

Sharing is Caring, but how much?

Hi All,

It's blowing my mind how many people are tuning in to this blog  just since I originated it three days ago. Originally I thought this would be for friends & family and a few CF'ers I know well.......a few has turned into a WHOLE.LOT more people. I am in awe at this opportunity, I am humbled, I am Blessed, I thank God not only for the opportunity but for so many caring people in my life and beyond who are interested and for the AMAZING state of progress and research for CF. I want to share every detail, to "take you along with me" in the hopes of inspiring others to take their health by the reigns, to participate in studies if they can, to do what they can to improve their health! Unfortunately there is a line to what I can share, I will be documenting everything as I go along and can't wait until I CAN share more.

Respectfully yours,
Nicole 
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1 comment:

  1. CftrSplicingJanuary 14, 2013 at 12:40 PM

    I tried to join the trial. But they don't accept people from EU.
    I started a site www.cftrsplicing.com to explain How Ivacaftor works and opens the CFTR on protein surface for splicing (residual) mutations aswell.
    I guess that with the breakthrough therapy desgination the path will be shorter to get the approval of the n=1 trial configuration.. but in EU I guess it will be a long trip.
    Help us EU CFers if you can.

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