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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...
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...
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...
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!
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...
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...
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.
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...
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.
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/
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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