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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. Sarah Maddie's Mom

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    Only if you take Becky and Karla's posts and twist and mangle them.

    Since you sounded the alarm in the adult blog community, perhaps you feel the need to justify pulling the fire alarm now that there is obviously no fire? But not on the backs of those two posts. No way, no how... to even suggest that that was their meaning is laughable.
     
  2. swellman

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    Dude ... NO ... don't logicalfy the situation - it's nitpicking.

    EDIT: That was totally snark but it was obvious that there was an odor of kids vs adults when read from 1st to last - probably unintentional but it was there.
     
  3. frizzyrazzy

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    sigh. around and around we go..

    lets start at the very beginning shall we :

    THAT is where the Adults vs kids started. READ IT. JDRF's CEO has said "The second big change at JDRF is moving away from an exclusive focus on children and also embracing the adult type 1 diabetes audience."

    Becky's first post was in direct reference to what JDRF's CEO said. She is entitled to feel that she's being abandoned.

    In post 8 - Karla's post - it's been stated over and over and over AD Nauseum that Kids means "ALL KIDS" You are someone's kid I presume? No? Or did you just will yourself into being? KIDS - when you become a parent you will understand that your child, no matter how old, will be your kid.

    Post 9 - again, that poster is simply commenting on what JDRF's CEO has stated. That poster clearly liked it better when JDRF's programs were aimed at kids. NO ONE (unless you are an idiot) thinks a cure would just be for kids. However, JDRF's programs have always been for kids with a kid focus. She also said she wouldn't leave her support for JDRF.

    the adult vs kids "debate" only happened when ADULTS came here and told us we were all being big meanies and didn't want a cure for them. Only for our kids. Which is just laughable. So.....lets back up.

    It is PERFECTLY and 100% acceptable for parents here who have supported JDRF to feel let down. Yay for the adults who will now get programming or whatever from JDRF (you too could get a bag of hope). I haven't seen much from JDRF anyway, yet I still walked every year and sent them thousands of dollars. In the past years our focus has shifted to other organizations. That is a personal decision. WHY , when we're busy giving so much money to JDRF and midstream their focus has changed, why is it NOT ok for us to be upset?

    again, I quote the CEO:
    "The first very big transition is we’re moving away from the over reliance on the cure as the central part of our message and funding."
     
    Last edited: Feb 3, 2011
  4. Flutterby

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    And they are MY opinions. I'm allowed to have them.. If you don't like it, fine you don't have to like it... no need to put others down to make yourself feel better. Your little witch hunt only made yourself look silly.
     
  5. swellman

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    Sure ... you're allowed to have all the opinions you want - all in one thread ...and I'm allowed to voice my opinions about yours. Nice how that all works out, isn't it?
     
  6. buggle

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    Since you're re-reading everyones' posts and quoting them back, go read what I said about Brewer personally before I had a clue he was reading our posts. I did not attack a person at the helm. I am concerned with how JDRF as an institution has morphed into something different than it started. I am truly confused how people can't see that it's a conflict of interest for a former CEO of J&J, a member of the Johnson family who owns a huge portion of the company -- becomes the CEO of JDRF and gives money to the company. I would think that alone would make him not ethically eligible to hold that post. He was a parent of a T1 child too, and I don't doubt the parental hopes he held for his child. But I do question what went wrong in the JDRF's structure to not see this as an issue.

    J. Richard Munro, who was once CEO of JDRF himself, has stated similar views to mine.

    Go read where I said that corporations are not evil and what I said about the people who work for them and JDRF. Did I impugn anyones' motivations or character there?

    We obviously will never agree on certain subjects. I'm much more cynical than you. You have more faith in our capitalistic system and the hope that industry will do the right thing by our children.

    I completely understand why people want to believe that that JDRF is on the right track and that the companies have lofty goals and care more about a cure or a treatment that would make their products obsolete than they do about their profits. But I can't believe that, though I'm sure it'd be emotionally easier for me if I could.
     
  7. Flutterby

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    THANK YOU for pointing that out Michelle. I can't believe something so silly is being argued about. :rolleyes:
     
    Last edited: Feb 3, 2011
  8. Flutterby

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    When I found this out, I felt betrayed. Its when I started looking closer at JDRF and how things have changed.
     
  9. MamaC

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    It's not US against THEM

    Here's a newsflash for anyone who perceives that it's all abut T1 kids vs T1 adults. (And this really doesn't even spring from the JDRF issues at hand.)

    I used to have a child with T1, diagnosed during puberty. I almost lost him to a hypo episode in a swimming pool (yes I'm rolling that out AGAIN). A cure at any time would have been wonderful.

    That child of mine is now a young adult with Type 1. I still would love for him to someday be cured, and I don't consider the AP a cure. I would also love every T1 patient of every age to have a cure: infant, preschooler, kid, teenager, adult. Every.single.one.

    His life doesn't suck, but his diagnosis changed him profoundly. He will never get the rest of his carefree childhood back. He'll always be the kid who almost drowned in his neighborhood pool. Without a cure, he'll always have either me or a little voice in his head prompting him to check his BG regularly. Mind you, he does EVERYTHING he did before dx and has picked up a few new tricks along the way, and was one of JDRF's faces of diabetes as a participant in the 2009 Children's Congress.

    Now there's something he couldn't have done as a child WITHOUT diabetes. ;)

    Oh, and he's a great kid with a great life and a bright future...not BECAUSE of T1, but DESPITE it.

    Parents love their kids. Parents worry about their kids, and worry in a different way about their kids with challenging situations of any kind. Doesn't mean we're blind to the rest of the population and their issues, or that we jealously guard the nebulous possibilty of a future cure so that we can keep it all to ourselves.

    I'm guessing this won't see a lot of tweets or blogs. Fine by me.
     
    Last edited: Feb 3, 2011
  10. swellman

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    Ok, just so we're clear - do you or do you not believe this person funneled money to his former company improperly and, more importantly, contrary to the mission of JDRF?
     
  11. Sarah Maddie's Mom

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    tweet, tweet

    Could you adult, professional Type 1s hold us parents in any greater distain?

    I think not. :rolleyes:
     
  12. leeannthill

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    Knowing who I am is kind of irrelevant actually. I just meant I've only chimed in a few times in the past in other discussions. I'm not a regular participant here, so I don't have a 'relationship' with everyone who posts regularly the way you have with each other - and I was trying to acknowledge that because I know that sort of thing rubs people the wrong way, especially in a highly-charged discussion like this, as evidenced by some discontent expressed that non-regulars are showing up and adding comments here.

    I feel like there's probably a lot being lost in translation here, and the hostility is definitely interfering. As I said previously in response to another post, if someone doesn't feel like my comments feel relevant to them, then they aren't. I know everyone here is different, and just like many of the comments about "T1 adults" here don't apply to me because T1 adults are hardly a homogeneous group of single mind, comments directed at "T1 parents" are not going to apply to all T1 parents. It was not my intention to imply otherwise.

    Also, I don't think you said it, but I believe there have been comments about people making this a T1 kids vs. T1 adults conflict of sorts. Perhaps I didn't express it, but my feeling is that there is no such conflict because we're all the same: many of us were once T1 kids, and someday, the T1 kids will be T1 adults like me and my peers. I might not be able to intimately relate to one's position as a T1 parent, but I relate to being a T1 kid.
     
  13. buggle

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    I do not believe he funneled money illegally. I do feel that having a relationship with his company while he was CEO of JDRF was unethical. I don't know anything about him as a person. I just don't understand how JDRF could think that was acceptable.

    Everywhere that I have ever worked, it's been part of the code of ethics that I could not have contracts with or give grants to any company I had a relationship with or even an appearance of a relationship. I would think that a foundation the stature of JDRF should have ethics above reproach.

    Have you gone back and looked at my posts yet? Our first interaction was ugly on a similar thread a year ago, but over that time I've come to like you and I feel that you unfairly took shots at me because you don't like my diabetes "politics."
     
  14. thebestnest5

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    I find the kids vs. adults issue absurd.


    My child will be an adult in approx. 6 years--she'll still be MY KID.:cwds:

    My brother is an ADULT with T1 and I don't want any less for him than I want for my DD.
     
  15. Flutterby

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    I am absolutely sick over the fact that professional D bloggers are getting a kick out of this thread and fueling the fire. When I read things like this
    It makes me absolutely discusted. I hope you all had fun.
     
  16. simboss

    simboss New Member

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    "us" vs "them"

    i'm not understanding the "us" vs "them" mentality that seems to be going on in this thread. Can someone (or several someones) please explain it to me?
     
  17. Flutterby

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    It was a misunderstanding.. there is no 'us vs. them'.
     
  18. PatriciaMidwest

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    Are you kidding me?


     
  19. simboss

    simboss New Member

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    No.
    Reading some of the posts I'm not understanding where the hostility is coming from. From what I can tell everyone on this board is either a person with diabetes or loves a person with diabetes. I don't think there is any one posting who DOESN'T want a cure.
    honestly i haven't read the thread in it's entirety. I want the Cliff's notes
     
  20. buggle

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    If the CEO of JDRF get through this entire thread, than you can too. :p:):p

    Get a cup of coffee or two first, though.
     
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