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    Sticky: Thinking of you and your beautiful family. May...

    Thinking of you and your beautiful family. May these memories bless you!

    http://forums.cysticfibrosis.com/showthread.php/17569-Praying-for-Micah?highlight=Micah

    salt and light,
    imogene
  2. Vertex News: SYMDECKO approved for patients 6 years and older....

    -SYMDEKO is now approved for patients 6 years of age and older with two copies of the F508del mutation or one copy of a responsive mutation--Vertex's third medicine approved to treat the underlying...
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    Nasal Polyps Research

    Who Can Participate: People (18 years and older) who have been diagnosed with nasal polyps (United States only)

    Earn: $100.00

    What is it? A 60 minute telephone interview (with webcam). It will...
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    Profiting from Big Data in the UK

    UK public concerned about tech firms profiting from NHS...
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    CF parents start a buyers club in the UK

    https://pharmaphorum.com/news/orkambi-parents-start-buyers-club-to-import-generic-version-of-cf-drug/?utm_source=pharmaphorum+Daily+Newsletter&utm_campaign=8b1c994496-EMAIL_CAMPAIGN_2019_06_05_11_31&u...
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    Vertex: Triple combination~ Breaking News

    https://investors.vrtx.com/news-releases/news-release-details/vertex-selects-triple-combination-regimen-vx-445-tezacaftor-and
  7. There are 148 participants! A $25.00 gift...

    There are 148 participants!
    A $25.00 gift certificate to participant 150, 175, and 200!
    Participants are from:
    Every state except Wyoming!
    Countries: Canada, Philippines, Australia, South Africa...
  8. Groundbreaking Research for CF on brink of finding universal treatment!

    https://kval.com/news/local/groundbreaking-research-for-cystic-fibrosis-on-brink-of-finding-universal-treatment


    Salt and Light,
    Imogene:o
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    FDA back Manitol for CF!

    https://www.mdedge.com/chestphysician/article/200639/pulmonology/tight-vote-fda-panel-backs-mannitol-cf
  10. Data Provenance and Workflow Survey! Our Genomic Diaries! 148 participants so far!

    I am getting ready to present to the FDA next week.

    The topic is our Genomic Diaries: Provenance and Work Flow!

    Take the survey please:

    https://www.surveymonkey.com/r/WMT7JPG

    And $25.00...
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    Vertex Kaydeco for babies!

    FDA Approves KALYDECO® (ivacaftor) as First and Only CFTR Modulator to Treat Eligible Infants with CF as Early as Six Months of Agehttp://bit.ly/2GExCPa
  12. New Survey: Using an App for Research and Compensation

    New Survey: 131 participants so far! From:

    You come from:

    PA, Oregon, MA, Ohio , Nevada, Vermont, Indiana, California, NJ, Missouri, North Carolina, NY, Idaho, Mississippi, Tennessee,...
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    Thanks Jim Caldwell for the Forum UPgrade

    Hi All,

    It is always quite an endeavor to update our forums and we have had a few scares this week! As Jim tried to give us a new, more modern look. It turned out many of us just were fine with...
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    The Nuts of Bolt: a new book

    Thanks Sara and Dan Kominsky for telling us about your new book~


    Her lungs irreparably damaged after forty-six years of wrestling with Cystic fibrosis, Sara Kominsky chose to pursue a BOLT, or...
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    Pre-teen an inspiration

    https://lasentinel.net/pre-teen-cystic-fibrosis-patient-an-inspiration-to-others.html

    Thanks for sending this!
    Salt and Light,
    Jeanne:o
  16. 600 years’ supply of cystic fibrosis drug destroyed in price row

    Nearly 8,000 packs of Orkambi, the breakthrough medicine for cystic fibrosis, have been destroyed by the manufacturer while it has been in a stand-off with the NHS over the high price it wants to...
  17. https://www.theguardian.com/society/2019/mar/27/60...

    https://www.theguardian.com/society/2019/mar/27/600-years-supply-of-cystic-fibrosis-drug-destroyed-in-price-row
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    New Forum UPdate coming soon.

    Know that Jim Caldwell is working with VBulletin to upgrade our forums...I know many have been waiting a long time...(Me especially!)

    I'll keep you updated!
    Salt and light,
    Jeanne
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    Insurance question post transplant

    This question came in via email:
    If anyone has information...post it here...

    "I had a really important question regarding insurance

    for photopheresis for chronic rejection post transplant ...
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    Opening March 15th

    Opening March 15th
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    Vertex CEO hints at new ideas for the UK

    https://pharmaphorum.com/news/vertex-ceo-hints-at-new-ideas-to-bring-orkambi-to-uk-patients/?utm_source=pharmaphorum+Daily+Newsletter&utm_campaign=0bbb30c03d-EMAIL_CAMPAIGN_2019_03_05_04_01_COPY_01&ut...
  22. UK politicians to grill Vertex on the price of drugs

    https://pharmaphorum.com/news/uk-politicians-to-grill-vertex-ceo-over-cf-price-drug-row/?utm_source=pharmaphorum+Daily+Newsletter&utm_campaign=e37ce9a59c-EMAIL_CAMPAIGN_2019_03_05_04_01&utm_medium=ema...
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    New Book: My DNA Diary

    Dear Cystic Fibrosis.com


    My book "My DNA Diary: Cystic Fibrosis" is aimed at upper elementary level and beyond.
    It is a diary of exactly how DDF508 variant of Cystic Fibrosis is inherited,...
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    Wow~ A compliment from LittleLab warms my soul! ...

    Wow~ A compliment from LittleLab warms my soul! Thanks LittleLab. I am impressed with Ashish. He has a big goal...300 million people with identity by 2023!
    He now has 200,000 people on his...
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    Petition only for the uk

    Petition – will you sign it?
    Click this link to sign the petition:

    https://petition.parliament.uk/petit...BvAkdItIg9oIV5


    My petition:
    3-drug therapy Symdeko Cystic Fibrosis
    I have Cystic...
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