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Thread: Code of Conduct

  1. #1
    Administrator
    Join Date
    Mar 2003
    Posts
    2,291

    Code of Conduct

    Our Code of Conduct was last updated in 2007. It was well written by an ANGEL some of you may remember LightNLife! I miss her...thinking of her in her final reward thinking about us just makes sense to me...the communion of saints!

    One of the prime rules allows and even encourages disagreement but absolutely no personal attacks, no flaming, etc.

    I know we have 30,000 unique viewers a month here at CysticFibrosis.com. This has become something like a Wikipedia of anecdotal patient/caregiver stories. We have a million searchable messages on all topics CF.

    We are open 24/7 and we have always had Health Opinion Leaders helping with the site. They are made up of patients and caregivers. People who are present and reading most of the posts. They have volunteered to help answer the many questions. They are kind, empathetic and knowledgeable.
    CysticFibrosis.com has always been a free space, where people can join and post or just lurk.
    For 20 years, it has been a valuable resource for this patient/caregiver community. There are so many who are active and join in to help the effort every day!
    I am proud and thankful to be a part of it.
    The Health Opinion Leaders are:
    Melissa75, Triples15, Gammaw, Jaimers, Dank, Ethan508, TwistofChaos, LittleLab4CF
    They work hard and do an amazing job.. their responses are filled with empathy and knowledge.
    Salt and Light,
    Jeanne

  2. #2
    Super Moderator
    Join Date
    Mar 2012
    Posts
    2,035
    Thanks to all!

  3. #3
    Super Moderator
    Join Date
    Apr 2007
    Posts
    1,133
    Thanks to Jeanne and everyone who makes this site what it is! And to Lauren, who made me feel so welcome here all those years ago, and shared her talents with all of us!

    Autumn

  4. #4
    You guys are all awesome! Thank you.

  5. #5
    Senior Member
    Join Date
    Jan 2015
    Posts
    279
    Thanks for the reminder. Just wondering, how many times can I use the word "darn" before I get banned? (NOSEPICK)
    Thirtysomething Dad of three (IVFw/ICSI), Mormon, Engineer in Utah.
    I was dx at 1 yr (failure to thrive), D▲F508, FEV1~94%, PA and MSSA, PI.
    2 brothers w/CF, 3 siblings w/out. My wife and parents are saints.

  6. #6
    windex125
    Guest
    Is thank you enough, not sure?? I am not sure who told me abt this site or how long ago I joined, but the information I hv gotten is simply amazing. You think I wld know everything there is to know at this late age of 60. But I don't and whenever I needed a answer to a issue I posted, or if I felt I cld help someone, I tried to answer as well. This site is my therapy in a way, as I hv so many other issues that came abt with the CF as the years passed. I know this will sound crazy but please Imogene what does Salt and Light mean??? I've askd a few friends who are more knowledgable with computer lingo... and so far no answers. Pls enlighten me. Bless you all for working so hard for all of us. many Hugs

  7. #7
    Carol H
    Guest
    Thank you to everyone on this site! I can read the forums all the time and I know each day I learn something new. I am always trying to find a way to help my daughter and her family out and my amazing grandson! Some days just read how everyone is doing and others a new way to look at a issue or a problem with a new solution. CF can be very complicated and each kid, adult, it is different just like all of us! For my grandson, Thank you is not enough but having pen pals through this site has really made a difference! He knows he is not the only one and for little guy 6 years old that meant so much! Now when we discuss CF he talks about his friends with CF and that we all have rough days but together we can all get through this! Special Batman powers are just a bonus
    Thank you!!
    Carol

  8. #8
    Administrator
    Join Date
    Mar 2003
    Posts
    2,291
    Thanks again to all the HOLs who continue to keep us fresh, updated, and relevant!
    Carol: I used your testimonial in a blog I am writing for a new group I have been invited to join...The Atlas of Caregivers.
    Windex: I smiled to myself as you try to figure out the technical meaning to "salt and light"...it is from 2000 years ago...a Sermon on a Mount...
    The Beatitudes speak to my heart...they are my touchstone and have been since I was four years old and found out my baby sister had died from a heart condition...the reason I get up and get out of bed each day...
    They are the simple tweets of a Jewish Rabbi that end with the reminder and call to be:
    The salt of the earth...the light of the world. They are the reason the lights are on...sometimes I wonder how but never why...
    Salt and Light,
    Jeanne

  9. #9
    Junior Member
    Join Date
    Nov 2012
    Posts
    4
    A HUGE THANK YOU to y'all! I have learned alot, & enjoy all the information! Thanks for your efforts!

  10. #10
    dyzaman
    Guest
    I always come back now and then, lurk, maybe post, get some info, and comfort.
    Thanks again from the old country.
    Craig

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