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Researchers Identify Pivotal Immune Cell In Type 1 Diabetes In Humans ..Funded by JDRF

Discussion in 'Parents of Children with Type 1' started by sooz, Jan 13, 2012.

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  1. Christopher

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    Or is it because they didn't get the exact response they were looking for, and gave up too quick?

    Let's be real, you have been around here long enough to see that there are a ton of very kind, smart, helpful, caring parents and PWD on this site who offer DAILY support, information and guidance. So I really have trouble believing that you know "a lot" of families who don't come here anymore because their feelings were not appropriately responded to.
     
  2. MamaC

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    A good old-fashioned group scold. How's the view from up there?
     
  3. momtojess

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    Where's the like button?

    I was enjoying reading a nice discussion about research till someone rode in on her high horse. Thanks for detailing a nice thread.
     
  4. swellman

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    This is the most conspiratorial, and ironically naive, statement I've seen on this site for several months.
     
  5. Sarah Maddie's Mom

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    Look back to JDRF on Faustman and her work about 4 years before your child was dxd and then call me naive.
     
  6. swellman

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    Yes, I'm sure that the organization, created by parents with a child with diabetes and who is staffed with people personally connected to T1D, which funds research towards finding a cure, expended resources to discredit someone who just might cure their child, for reasons only the most darkest of conspiratorial thinkers might imagine, makes sense to some people.

    Not to me.
     
  7. sooz

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    When I made the original post, I knew that there would be the usual anti-JDRF people putting it down, and, no surprise to me, that is what happened, right on schedule. I took the risk of posting it in spite of that, though, because I just can't let the implication that JDRF does not fund research, and is not looking for a cure and not trying to help our kids be the only voice heard. I know that I am entirely ignorant compared to some of you, but I am grateful for all the research being done on behalf of our kids, whether it is by Faustmann or funded by JDRF. Thank you to those of you who understand that. Bottom line, I was just sharing information that I am not able to evaluate in its totality. It seemed promising to me, and that is why I shared it. For those who don't agree and prefer to roll your eyes and be amused by my posts, so be it. I'm a big girl and have been told often enough here to get my big girl panties on that they are firmly in place. Read the post, be excited about it, or be amused and discount it. The choice IS yours, of course.
     
  8. Sarah Maddie's Mom

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    Time for you to do some homework swellie.
     
  9. caspi

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    Two words to Google: Faustman JDRF

    It's all there in black and white...............
     
  10. Sarah Maddie's Mom

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  11. Sarah Maddie's Mom

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    see the above link sooz, it will help with this ;)
     
  12. swellman

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    Ah, assumptions, assumptions.

    Like any respectable conspiracy theory, the first 20 or so Google hits are opinion pieces, blogs and rants - most of which refer to the same one or two sources which is an opinion piece or poor journalism.

    However, I did run across, through said Google search, something that I hadn't seen before which was a letter from Denise Faustman herself in which she clearly stated (emphasis mine):

    EDIT: That having been said I wish her nothing but good luck and godspeed.
     
    Last edited: Jan 19, 2012
  13. Sarah Maddie's Mom

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    Nice out of context quote.

    And drop the "conspiracy" rubbish please. There is no "conspiracy" - just bad science and bad decision making by JDRF.
     
  14. Lisa P.

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    Tamara,

    Here's how I feel about the tone of site, and I've said it before. I believe all civil and respectful opinions should be honored, and personal attacks and dishonest argument should not be. I feel people all around the board have bowed out of this site, you and Sarah are both right, and it's not because of disagreement but because of personal attacks and dishonest argument. I strongly feel people should be encouraged, and not discouraged, to express a wide diversity of opinion here, and should feel they are free to do so without finding a target on their backs and without having folks dissemble about what they are saying (e.g. paraphrase their thread in a way that misrepresents what they said and makes it easier to attack, ridiculing an idea instead of addressing it, going ad hominem, all the old rhetorical bunk). This site is impoverished when that cannot happen.

    As for the JDRF threads I will, yes, Sooz, be one of the usual chorus when there is a post about JDRF accomplishments. I'm sorry you feel that is personal, I hope I avoid being dishonest or personally disparaging in my JDRF posts. Here's the reason I pipe in.

    Many new parents assume everyone supports JDRF, they do not realize that there is a diversity of opinion on the subject. JDRF gets a lot of money and time from parents simply because it is the big, known organization. I feel that many find after a few months, or years, that they wish they had looked into it more closely because it does not do what they wanted it to do. They might regret the time and energy and money they have spent there, that could have been spent elsewhere. I'm not telling anyone that they have to dislike JDRF. What I'm telling them is that some people do, so they need to look into it themselves before they support it.

    As for why I don't support JDRF, there are many reasons that can be looked up and don't need to be discussed again here, but Tamara, I believe my emotional reaction against JDRF is the same one you have for it -- you believe they are furthering progress towards curing diabetes, so you feel strongly about them. I believe it is hampering progress, so I feel strongly. And that's not conspiracy, it's just math. If 90 per cent of the funding the population of the U.S. gives for diabetes research goes to JDRF, and JDRF spends it poorly, that may very well prevent a cure from being found in my daughter's lifetime. That is very emotional to me. It feels like a family has pooled its grocery money and Aunt Sally comes swooping in and scoops it all up to run to the grocery, then stops at the bar instead. :p:p Not happy with Aunt Sally.

    Every time one of these threads comes up, I honestly read it and honestly see if my opinion on JDRF has changed. I appreciate that Sooz is trying to show folks like me that I'm wrong, seriously, because if I'm wrong I'd love to know. And just because my opinion hasn't changed doesn't mean I'm not mistaken, I make mistakes all the time, more often than I don't. But after reading and with the knowledge I have of previous JDRF public relations and actions my opinion following this report has not changed. JDRF does not seem to be furthering progress towards a cure for Type 1 diabetes. I do not disrespect or disparage those who support it, and those doing good work under its title are still doing good work and should be commended. But I do not support JDRF, and I'm sure folks here respect my opinion on that.
     
  15. Tamara Gamble

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    Lisa P, I'm not entirely disagreeing with what you have to say. That being said, the JDRF allows me to advocate for children and their families. I remember being one of the families who needed help. I have no emotional ties for any organization. I started with the ADA. Both organizations on this front hold value. My goal is to one day eradicate discrimination. Better yet, not have to worry about it because we find a cure. However we find that cure is good with me. I just wish the diabetes home-front were less adversarial and more productive. I believe that together we are so much stronger. United we stand, divided we fall.
     
  16. Lisa P.

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    I firmly, whole-heartedly believe that there are many good people doing great work within JDRF.

    I'm not one to be real good on the unity thing, but I promise I'll think on it today! :)
     
  17. Tamara Gamble

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    Thank you! Have a great one!
     
  18. Style mom

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    Personally, I find that it is generally not necessary to proclaim what sort of undergarments I am wearing if they are indeed the appropriate undergarments for the occasion.

    I generally agree with what LisaP. stated above. I do not think that JDRF should be some sort of sacred cow around here, and that we should be scolded or shamed into lockstep approval and reverence for every movement that they make. This is a message board, and we are a diverse group of people. We all come at this with different backgrounds, experience, knowledge and, yes, biases. To expect that we would all share the same opinion about JDRF is just completely naive.
     
  19. Helenmomofsporty13yearold

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    JDRF also helps people live with diabetes. I believe with all my heart that participating in their functions has helped me and my daughter cope with d. We have met so many wonderful families and volunteers. My DD's self confidence and acceptance of d has been boosted by participating in their events, from knocking on doors to collect donations at the age of 8, to lobbying our government and shaking our Prime Minister's hand, to being a Youth Ambassador and speaking about her d in front of 1000's of people, to just going for a skate with other CWD's and generally just being a part of it all. I love the opportunity to meet the newly diagnosed families and watch their faces light up as they see our kids doing so well living with d. Overall, I am grateful for all organizations that exist to help my child.
     
  20. caspi

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    Well said.


    What you don't seem to understand is that when people disagree, they aren't necessarily adversaries. They just have a difference of opinion. And quite frankly, this thread was going along quite well until you came in and started stirring things up. :(
     
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