Recent content by grammakaky

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    FDA Advisory Committee on Combo in Process

    What was her job there. She didn't do anything to help our cause. The ones they were worried about voted it through.
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    FDA Advisory Committee on Combo in Process

    Thank you for having the link for the live blogging. I followed it all the way and right now I so full of Emotion. Happiness, crying. Thank you, Thank you. the FDA advisory panel votes to recommend the approval of Orkambi in CF patients with the f508del mutation.
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    Lisa Greene's Husband Passed Away

    So sad to hear this. Prayers for all of them
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    Email address for the fda committee

    Forwarded the infor to my facebook CF group. They are getting their letters together too.
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    Email address for the fda committee

    Sending my letter right now, TODAY!!!!!
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    Surprising Results with Essential Oils! Give it a Go!

    My two granddaughters have cf and we have been diffusing for acouple of years now. We use a Himalayan salt lamp with a built in diffuser. She also sells the different oils. My granddaughters are stable (both DDf508). We burn at night while they are sleeping and it is also a nightlite for...
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    New Baby and speculation on CF

    I do remember right off if pancreatic insufficient; stools were almost a neon green color. Very noticeable if not on enzymes!
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    What is going on with Vertex?

    Our doctor said the same thing. His hopes are in the vx-661 and he told us that a year ago. I just hope the vx-661 doesn't get a delay if the vx-809 isn't promising.
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    Vertex and Phase 3 trials of VX 809

    Interesting read and fingers crossed! http://www.bizjournals.com/boston/blog/bioflash/2014/05/vertex-faces-seminal-moment-with-pending-cystic.html?page=all
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    Jesse: Jane's son

    Im so sorry to read this. I remember reading Jane's posts also about her sons. This is so tragic. My thoughts and prayers are with all of them.
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    Surprising Results with Essential Oils! Give it a Go!

    Hi everyone, Im a grandmother to 2 girls with cf and I've been using essential oils for little over a year. We use a salt lamp with a built in diffuser for buring essential oils. This is the website we get ours from. The Munio oil is considered her theives oil. We are going to try the next...
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    Grandma's Reaching out!!

    I would love a Grandparents section. I'm a grandparent of 2 granddaughters ( ages 3 & 5). My daughter is a single mother and we are her main support team. It's hard at times; esp now, my oldest granddaughter is in the hospital with respiratory issues. It's the usual 2 week stay. Her grandpa...
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    Hypertonic Saline in 2 year old

    Both granddaughters (3yrs & 19mths) only do HTS twice a day.   They tolerate it well.  They were not put on Pulmozyme. 
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    Hypertonic Saline in 2 year old

    Both granddaughters (3yrs & 19mths) only do HTS twice a day. They tolerate it well. They were not put on Pulmozyme.
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    Hypertonic Saline in 2 year old

    Both granddaughters (3yrs & 19mths) only do HTS twice a day. They tolerate it well. They were not put on Pulmozyme.
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