Cystic Fibrosis Forum (EXP)

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    Happy Independence Day USA!

    Happy 4th of July to all the USA members and we hope you enjoy your day. Peter and took our walk in Verona Park to celebrate...love the birds! The Independent black crowned night heron...born precocial...and the little baby ducklings needing their mom all adorable. just different styles of...
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    Ataluren moves along! Phase 3

    http://ir.ptcbio.com/releasedetail.cfm?ReleaseID=856937
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    Bionic pancreas!

    http://mashable.com/2014/06/17/bionic-pancreas/
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    The Council of Dads

    I guess, remembering my dad, Jack Burke is a really important memory for me...especially here as I know I got the gift of computers and programming from him. He was an original, a Senior Method Analyst at Prudential Insurance Company back in the 1950s! I grew up with technology and am always...
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    Wondering where the best centers are for lung transplants?

    I noticed this centers news this past MAy....http://www.sciencedaily.com/releases/2014/05/140517085811.htm Looking for other centers....
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    Tobramycin used in young children examined

    http://www.cysticfibrosisnews.com/tobramycin-use-examined-in-young-children/?utm_source=All&utm_campaign=CF-June+3%2C+2014+All+but+Canada&utm_medium=email
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    The Power of Two and the art of saying goodbye Ted Talk

    http://campaign.r20.constantcontact.com/render?ca=fdc0ef70-a3e5-4cb0-aa01-458533de3026&c=ee129cf0-35ca-11e3-802e-d4ae527536d1&ch=ef2da9e0-35ca-11e3-80ec-d4ae527536d1
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    Where healthcare is going....

    http://medcitynews.com/2014/05/vinod-khosla-has-more-predictions-about-future-of-healthcare/
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    Print your own medicines. !?

    http://www.ted.com/talks/lee_cronin_print_your_own_medicine?utm_source=email&source=email&utm_medium=social&utm_campaign=ios-share#t-168438
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    Ataluren Phase 3 Trial Results

    http://ir.ptcbio.com/releasedetail.cfm?ReleaseID=848453
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    Jesse: Jane's son

    For all of you who remember the stories Jane would tell in her archived blogs here...we cried and laughed and celebrated Jesse's life with Jane through her stories. Jesse died waiting for new lungs this week. Peter and I especially remember meeting the family and taking them on our tour of...
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    Happy Mother's Day!

    I always think Sarah Kay is inspirational..spoken word poetry it's called. Even if like me, you've seen this 20 times, I offer it as some great thoughts on nurturing, mothering, fathering for daughters and sons...I'm sure that this kind of love isn't gender specific and when I gave this poem in...
  13. I

    Happy Easter

    For those of us celebrating today... Alleluia, He is Risen! This is a place, where people "dance with fear" everyday! This TedTalk may be interesting to all! Salt and Light, Jeanne http://www.ted.com/talks/chris_hadfield_what_i_learned_from_going_blind_in_space
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    Kalydeco: Just in from a trusted member!

    Let me start by saying how helpful I’ve found the cysticfibrosis.com website. It has provided a place where I can read how others cope with experiences and situations similar to those I go through. Hopefully some of my comments have also been of some use to them. The real purpose of this...
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    Discovering what you didn't even know you were searching for!

    Here at cysticfibrosis.com it happens all the time! http://sethgodin.typepad.com/seths_blog/2014/04/search-vs-discovery.html
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    Singer and girl with CF

    http://www.people.com/people/mobile/article/0,,20802536,00.html
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    Editing the DNA

    — researchers at the Hubrecht Institute in the Netherlands showed they could fix a mutation that causes cystic fibrosis. http://www.nytimes.com/2014/03/04/health/a-powerful-new-way-to-edit-dna.html?ref=health?src=dayp&_r=0
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    One at a time

    http://myemail.constantcontact.com/SOTW-Making-A-Difference.html?soid=1101822068091&aid=DRUGXXbZvpo#fblike
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    On line support for caregivers of stroke victim?

    Community: My high school friend Dennis's wife had a stroke almost 2 years ago. She had worthless care in a system that failed every step of the way. Dennis is frantic, asking all his friends for help.... Well I was sure, I could find a good on line support group (like ours) only for stroke...
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    Happy New Year 2014

    May the year bring peace, health and joy! This year we will be donating to the community from our inventory. Today I have a Trek S Portable Aerosol System. If you have posted at least one hundred messages hefd at cystic fibrosis.com and know you could use this equipment, just email...
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