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    Jonny Simpson - An Young Man's Message of Survival

    I can't figure out the thumbs up icon. Sorry about that.
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    Jonny Simpson - An Young Man's Message of Survival

    Thanks Twist! He is the real deal. I saw an image of him with the picc line scars, flexing and I thought, now that's the face of CF. Kick CF's ass! And he's doing it. Here's his story. https://youtu.be/iKEIaZGR9w0 Please share as well. It's really good. I really appreciate it. This guy may...
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    Jonny Simpson - An Young Man's Message of Survival

    Thanks for all the views on this post, everyone. Show Jonny support and share. Many thanks!
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    Jonny Simpson - An Young Man's Message of Survival

    This brave young man, from the UK, is amazing and real. He's a CF patient and a body builder named Jonny Simpson. He has overcome so much in life, not just from CF but life itself. Given his message, there is nothing better than keeping it real, from one CF patient to another. He is truly...
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    A Matter of Awareness.

    This is a great post from Debbie McConnell. Let her know your thoughts. https://www.facebook.com/debbiemcconnell007?fref=nf "May is cystic fibrosis awareness month. I have been asked “where are all the posts you usually fill our news feeds with?”. The truth is that cystic fibrosis is not a bed...
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    Bill might soon allow students to self-administer enzymes in school!

    Thanks for the info! Some states already allow self-administering enzymes but if your state does not...find out what you can do to make a difference to students with CF!
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    SSA SSDI requirments annoucement update and Disability

    Ladybird, you are absolutely right. I couldn't agree more. At this moment, we're past the $18 trillion mark on debt. That certainly is unsustainable. I'm certainly not defending one side of the other. We all point to one specific group or a single politician to blame, yet it takes congress to...
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    Bill might soon allow students to self-administer enzymes in school!

    LittleLab4CF, thanks for the story. No doubt school systems these days have a zero tolerance, knee-jerk reaction to everything when common sense should prevail. As a result, a great number of students suffer by the hands of school boards that are more concerned about law suits than anything...
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    Bill might soon allow students to self-administer enzymes in school!

    Ethan and Believing, you're right! One of my family members had to go to the office to get his enzymes and it was very embarrassing. The kids would raz him. So hopefully this law will help others in the future.
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    SSA SSDI requirments annoucement update and Disability

    SSA SSDI requirments annoucement update and Disability - CF LEGAL For those of you who don't know, SSA had proposed changes in respiratory requirements back around 2012 that might make them more stringent. But at the 11th hour, CFF found out through CF Legal, got involved and offered testimony...
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    homage to my beloved son died after 28 years of fight

    Thanks for sharing Vincent's life. Our condolences to you and family. CF is such a terrible thing and no child should suffer and succumb. Keep Vincent's life online, whether YouTube, website or Facebook. Let his life and spirit live on for us as he does in your heart.
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    Need quick advice from adults with cf

    Here's something that is effective and gentle. Works for me! It's called Bentonite. You can get it at any health food store. This is a good brand. http://www.yerba.com/product/bentonite/ Great site, by the way! http://www.yerba.com/
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    Bill might soon allow students to self-administer enzymes in school!

    This is an example of what happens when volunteers and families take the initiative. So I have to brag! CF Volunteer and Advocate, Debbie McConnell and CF family, Peggy Davis of the Clarksville, TN chapter, met with Tennessee State Senator Mike Green and a bill was crafted to allow CF students...
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    why do I cough up blood every other month

    How are you doing, CAM? We hope better. Please let us know.
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    taxes!

    Bad link. Can you send it again?
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    why do I cough up blood every other month

    CAM, erock77 made a good point. There could be some blood thinning and perhaps some of the meds could be causing it. The V-K and ADEK vitamins could help but his right about making an appointment should the symptoms persist. Hang in there bro.
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    Where are all the people with CF on this forum when you need support?!

    While everyone is busy making their points on this thread, please offer support to all CF patients who reach out. Right now, CAM needs our support and prayers. http://forum.cysticfibrosis.com/threads/124167-not-doin-well-and-doctors-dont-know-y
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    not doin well and doctors dont know y

    CAM, I hope you are having a better day today. Hang in there. We hope that the folks in Pittsburg will fix you right up and get you in better shape. We're pulling for you so just know that we care and are concerned. Get well soon!
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    Arkansas medicaid case settled

    Jane, yes it is the case Beth Sufian worked on and in my book she's a hero and a life saver. She's a wonderful and passionate person for CF.
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    Arkansas medicaid case settled

    "Believing", actually SSA had already proposed changes back around 2012 that might exclude a few items but at the 11th hour, CFF found out, got involved and offered testimony and letters from patients, families and physicians. The ruling has been delayed for well over a year and that's a very...
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