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  1. Boomer Esiason Foundation's "Run to Breathe" Central Park

    The Boomer Esiason Foundation’s “Run to Breathe” event took place July 12, through Central Park in New York. The race attracted more than 7,000 participants with the goal to encourage cystic fibrosis patients and families to stay active. Chiesi USA supported this year’s race.

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    Steve Leach, ChiesiUSA; Boomer Esiason, Co-chairman of the Boomer Esiason Foundation; Dana Teti, ChiesiUSA

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    Steve Leach, ChiesiUSA;
    ...

    Updated 07-29-2014 at 03:25 PM by ChrisBaldwin

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  2. Treatment Burdens: thinking of your day....



    I saw this video (not CF Patients) and was reminded of all the time CFers spend that isn't even identified or quantified.
    The treatment burden covers more areas than realized by these patients

    Dr. Sawicki gives a radio broadcast on treatment burdens on CF RADIO:
  3. Dr. Francis Collin interviewed by LightnLife: Pharmacogenetics (He Sings)

    There have often been trained scientists here.
    One I love to remember is: lightnlife, Lauren Beyenhoff's user name.

    Lauren was a scientist who wrote some great articles for us.
    One I highlight today was written in May of 2008, when she interviewed Francis Collins, the director of the National Institutes of Health in Bethesda, Maryland. This interview may mean even more today as these drugs pass into our reality.
    I imagine she is smiling down on the whole CF community ...

    Updated 07-21-2014 at 03:41 PM by Imogene

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  4. The Scientists Matter!

    Here at cysticfibrosis.com, we know that scientists matter. They are behind all the treatments taken.

    I remember the first days of cysticfibrosis.com when people were having trouble with the directions for taking Pulmozyme…we went right to the Genetech Website: www.gene.com and right on the homepage page was Steve Shak’s phone number: the inventor of dornase the Pulmozyme drug.

    He answered the phone! He was surprised to talk to us and he was as kind as he looks but ...
  5. The Malaysia Plane Crash hits home at CysticFibrosis.com

    Dear Members and Friends of CysticFibrosis.com,

    Many of you may already have noticed the presence of Chris Baldwin here at the forums.

    I met Chris on LinkedIn during the spring of 2013.

    As many of you know, in my “other life”, I am a “domainer”. I began my career on the web in 1996, purchasing niche, valuable domain names.

    Since my original business partner had CF, CysticFibrosis.com was an original domain purchase and this amazing community grew ...
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