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Could it be...

Discussion in 'Parents of Children with Type 1' started by dzirbel, Mar 4, 2013.

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  1. mmgirls

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    While yes the "encapsulation" of islet cells does not stop the autoimmunity issues but the the whole idea is that the body either does not "see" the tranplant or that the body can not get into the transplant, yet the insulin/amylin/and glucagon can get out of it in real time.

    If you are a picture person this is another company working towards this idea, not just for Diabetes but alos other autoimmune conditions and Parkinsons and the like.

    ViaCyte

    so neither is a real cure, but if either of them can get it into human trials, now that wouldbe a step forward.
     
  2. fiaz

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    It was nice to see them on the front page of our Sunday paper.
    http://www.sacbee.com/2013/03/03/5229742/can-stem-cell-treatment-cure-type.html
    But this BioHub concept sounds exciting too because they answer some of the hard questions in the faq. The best cure would be some natural herb discovered on some remote island :) but it is heartening to see many scientists working on different paths with the current tools they have to look for a cure. And I am sure these different organizations learn from each other's progress. So this is all good.
     
  3. swellman

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    Unfortunately, that's how science works. If it doesn't pan out it's abandoned but if there's any part of it that can be used it might. It's the hype that leaves one empty.
     
  4. swellman

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    DiabetesDad wrote an apology to those who misunderstood the level of his excitement for something more that what it is. I think he half took ownership and half blames people for reading too much into it. He made it clear that he was not acting on behalf of DRI so, according to him, this was not a publicity stunt.

    I don't feel I read too much into stuff but I have to admit I called my wife who is out of town to let her know that there might be exciting news on the D front. I did NOT tell my child and I am so, so very glad I didn't.
     
  5. cdninct

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    Anyone notice all the DRI banners that have suddenly popped up on CWD? I felt a momentary pang of anger before I reconsidered and decided that DiabetesDad is really the only one on my naughty list today!
     
  6. Darryl

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    I was searching for the right word to describe the hype, thank you.
     
  7. sooz

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    I just noticed there was an advertisement for the DRI Biohub at the top of the CWD page. I also am glad I said nothing to my granddaughter about the anticipated news. Regrettably I sent it to a friend and possibly got their hopes up. As for giving money to it, right now I am not inclined to do so. While I pray for a cure with all my heart, there is now a lack of trust in my mind regarding this organization, which I place at the feet of DiabetesDad, who I believe stated he worked for DRI. Perhaps I will change my mind in the future. I hate to think that if this scheme is worthy, it has been hindered by such a poorly considered tact.
     
  8. caspi

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    I saw his apology, if that's what you call it when he says he's sorry if people misunderstood. :rolleyes: I'm not sure if people are aware that he works for DRI. His opinions may have been his own, but as an employee of DRI I think he crossed the line with his announcement of an announcement yesterday when he said that today a "very important announcement will be handed down... the biggest announcement in 20 years.... what we've been waiting for since diagnosis..." What did we get? An infomercial begging for money with statements like "To aggressively shrink the timeline toward the discovery of a biological cure, fundraising is critical" and "Support must come from people like you, people serious, passionate and commited to finding a cure."

    I hope I'm proven wrong and that this turns into something worthwhile. But I don't see it happening anytime soon. :(
     
  9. swellman

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    Nope ... because I Chrome with Adblock Plus :cool:
     
  10. Christopher

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    New advances take money. So simply hoping that this turns into something worthwhile isn't going to cut it. If you see merit in this, then support it. Or not. But simply praying or wishing for a cure is not enough. You need to take action, donate money, time, etc to whatever prospect you think has the best chance to cure this disease.

    (This is a general comment, not directed at you.)
     
  11. sheeboo

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    He's paid over $200,000 a year to work for the DRI! That's a tasty salary for manipulating people's emotions. This isn't the first time he's unethically used loaded emotional language to drum up money that in essence, pays for his way in life. I think he should resign.

    The DRI isn't a model of glowing financial efficiency, either.

    Here's their financial breakdown: http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=3624

    BBB rating: http://www.bbb.org/charity-reviews/...ute-foundation-in-hollywood-fl-3301/financial

    The DRI's 990 tax form....Mr. Karlya's salary is listed on page 10 of 70: http://www.diabetesresearch.org/document.doc?id=1051

    I hate that he (thinks he) represents "us" as D-parents; his actions compromise the integrity of the DOC.
     
  12. sooz

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    I agree it is important to donate to causes that merit our trust if we are able to do so. Wishing and praying are quite a human thing to do, as is dreaming and longing for something. It would be a sad world if we were not able to hope. I applaud hope and praying and wishing. Not everyone can do more, but support is not always monetary in nature. We are fortunate that we are able to donate to and volunteer with organizations that are important to us. The trick is how to evaluate organizations to assure ourselves they are honest and worthy.
     
  13. PixieStix

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    I realize the financial info etc is a matter of public record, but was that posting really necessary? Is it not possible that Tom Karlya happens to work for DRI and also is truly excited by this development as a parent of 2 kids with diabetes? He apologized, though I for one did not really read too much into his post yesterday. Never did he say THE CURE was to be revealed today...that frenzy grew on its own right here online. What should we do, lynch him for perhaps unbridled excitement??? I don't know the man at all except to have recognized his name as a respected longtime voice for T1 families. Calling for his resignation and firing--really??? I agree w/ Christopher--if you think this may hold merit for a potential cure, support it or follow it. If you got your hopes up and are disappointed this is not the news of an ultimate cure available to our kids NOW, I'm sorry for that too. IMO the outrage directed at Mr Karlya, and DRI, seems disproportionate.
     
  14. caspi

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    Perhaps not directed at me, but since you quoted me I'll respond. ;) I understand it takes more than praying and wishing for a cure. It's just that we've all seen this before and it's hard to get excited about something that is still a long way from fruition. I'm not saying people shouldn't support it - I'm just having a hard time getting as excited about it as DiabetesDad did in his hyped-up announcement of an announcement. ;)
     
  15. liasmommy2000

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    I have to agree with that. And honestly I can't imagine mentioning this to my child unless I knew they were very mature and kept up on the latest technology and research already. I'm cynical I guess and know that they always say "five to ten years" lol. Maybe that was his mistake, saying he is diabetes dad but maybe not for much longer. It's all on how you interpret "much longer". For me that would be a year or two, not five or ten. But maybe for him, that's close enough. I honestly think he was excited and meant well.
     
  16. sooz

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    I understand your position but when he said "WHAT WE HAVE BEEN WAITING FOR." " It is real, very, very real." and again, "It is real. " and his last sentence,

    "I am a diabetes dad. But it very well may be, for not too much longer."

    It is easy to see why people are disappointed and feeling negative about what is now being perceived as a cruel, ill conceived fundraising tact.
     
  17. sheeboo

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    I felt it was, yes. In the past, Mr. Karlya has used fear to generate donations, by manipulating statistics and downright lying about D-attributed children's deaths. I find that absolutely shameful. His salary is public information, available on the DRI's own website! I felt it was important to let people know that their contributions will, in part, go towards paying the man some feel took advantage of their emotions.

    You are as much entitled to your opinion as I am to mine.

    He his the VP of one of the largest diabetes research institutes in the country and his ethics/tactics, in my opinion are sketchy, at best. I find it difficult to trust an organization that is willing to lie, repeatedly, and manipulate language in order to play on the hopes and fears of the very community they are meant to be working for. I believe the DRI would be far more respectable without him as their VP.

    I don't actually find anything the DRI posted on their website about the BioHub problematic. They have new "concept" and they're promoting it. Good for them. The way Diabetes Dad hyped it, however, is another story.

    You're right, he didn't use the "C" word. But he did say this: "we are now grasping to the end we have sought for all of this time: to turn out the lights forever." I'm sorry, but that's just a sneaky way of saying, "the cure is here! We've found it."
     
  18. Christopher

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    So don't get excited.

    Do what I did, I read the information, saw it for what it was (bombastic hype), didn't get my hopes or excitement up, and moved on.
     
  19. hawkeyegirl

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    It was a dumb thing to do, plain and simple. All he would have had to do is to wait until today and people would have been able to judge for themselves whether or not to be excited. Honestly, I can think of no reason he didn't wait just one more day for his dramatic blog post other than to get the "scoop" on the rest of the DOC. In other words, ego.

    And his non-apology apology was further evidence of his insensitivity. Basically, "I'm sorry if you got your hopes up based on my hyperbole and what I knew but refused to tell you."
     
  20. Sarah Maddie's Mom

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    Why on earth shouldn't it be posted, discussed and evaluated here of all places??:confused: Should WE, the very people most likely to support the research toward a cure not know this? WE who will ask our friends and family members and co-workers to donate their hard earned money to DRI and JDRF and others? I cannot think of one good reason to oppose the posting of this information other than a desire to remain ignorant of the facts.
     
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