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JDRF going forward

Discussion in 'Parents of Children with Type 1' started by Sarah Maddie's Mom, Feb 1, 2011.

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  1. swellman

    swellman Approved members

    Jul 30, 2008
    I had no idea what you were referring to so I did some Googling.

    Then I did some reading.

    Then I did some eye-wiping.

    Why? Because I read a bit about ex-children who now live with T1 as young adults and I thought of my son.

    At first I was put off but it hit me that these are the people who actually HAVE the disease and what they think matters.

    I salute them even though they may disdain me - maybe I will follow their tweets and blogs in order to prepare me for when my son becomes a man with T1.

    I hope that he doesn't turn out to be a pompous ass as a young adult but I'm not holding my breath - that, he would come by naturally.

    @now adults with diabetes .... /salute
  2. PatriciaMidwest

    PatriciaMidwest Approved members

    Mar 2, 2010
    Ok, just so we are all on the same page:

    Robert Wood Johnson was not the CEO at JDRF. Dr. Allen Lewis was the CEO. Johnson's role at the JDRF was the volunteer Chairman, not to be confused with the Chairman of the Board.

    Robert Wood Johnson was also not the CEO at J and J. He is not employed by J&J. He is not on the board of J&J. He is a board member of the Robert Wood Johnson Foundation

    You asked "Do you think it's ok for the CEO of a mega-multinational pharma to run a foundation that gives out grants and give money to his own company when he owns probably the largest chunk of stock -- probably worth billions of dollars? Decisions he made as CEO of JDRF could affect the stock value of the J&J and therefore his personal wealth."I know what you are saying, but the facts have been lost somewhere. Wood was NOT the CEO of either the JDRF or J&J. Yes, I'm sure he owns lots of J&J stock. $8 Million in grants given to J&J over the course of a few years isn't a big deal to his stock portfolio or personal wealth. The guy is totally loaded. Supposedly, he did not even participate in this decision. If JDRF wanted to partner with a pump company, they really only had a few choices, right? I would be more shocked if the award went to Medtronic to be honest. The inner circle takes care of its own, sometimes it is a good decision and sometimes it's not. It doesn't seem completely ethical but it is reality. If Medtronic made its way to the JDRF board the same thing would occur.

    But, that's business in this country now and what we accept as a society. I don't. I feel it's wrong on so many levels. And I feel that it compromises the quality of research being funded by JDRF.Again, they really only had a few choices in pump companies. I think the Animas pump is a quality pump so I don't really have a big issue with this. If it was a piece of crap I would be really upset. Supposedly Johnson as well as another JDRF'er with ties to J&J excluded themself from the decision. I don't see using the Animas pump as compromising the quality of their research. Whether they picked Animas or Medtronic for example I think the A/P project would have similar results.

    Last edited: Feb 3, 2011
  3. leeannthill

    leeannthill Approved members

    Apr 5, 2010
    I've found reading the blogs of T1 parents very enlightening, and have developed connections with parent bloggers that are very meaningful to me. Similarly, I've seen many T1 parents express thanks to T1 adult bloggers for giving them both a glimpse into the future, as well as some insight into what their children currently experience (especially from those bloggers who write about their experience as children). This particular discussion aside, it's a really positive dynamic, and relationships between T1 parents and T1 adults have generated a strong sense of community and a deeper understanding of the variety of experiences that people have with T1, depending on their relationship to it.

    I appreciate that you shared this sentiment.
  4. StillMamamia

    StillMamamia Approved members

    Nov 21, 2007

    I like your post and appreciate your input.

    That said, the whole adults with T1 D vs children with T1 D was a misunderstanding which was later rectified (at least that's how I read it).

    Whoever is tweeting otherwise, make the darn correction! If you (general you) really want to do something other than jumping into this thread and go apesh*t on the parents, then stick around and give us your POV when we seek advice on how to handle this or that situation. Don't just make a pit stop and tweet on by.

  5. Barbzzz

    Barbzzz Approved members

    Jul 5, 2008

    Karla, you have such a way with words. :D
  6. Jeff

    Jeff Founder, CWD

    Jun 1, 1995
    It's time to close this thread, since it's descended into what can only be described as a scene out of Fox News or an old Saturday Night Live skit ("Jane, you ignorant .... ").

    Before I do, I want to share a story one of my very first experiences with the "online diabetes community" -- only it was on Usenet, before the World Wide Web. There was a diabetes support forum (misc.health.diabetes), and one of the most prolific contributors was a guy from Caltech who went by the name of "Speaker to Minerals." His real name was Carl Lydick.

    Carl had type 1 diabetes. In online discussions, he could be very supportive (and was to me), but he could also be terribly mean to anyone who didn't agree with him. He would often go on and on, berating people. It was sad to see, and unhelpful to the discussion.

    After a period of not hearing from him online, I learned that he had died from complications of diabetes. (http://alumnus.caltech.edu/~vance/carl_lydick.html)

    Let's all remember that we are not the enemy. The enemy is diabetes.
    Last edited: Feb 3, 2011
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