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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. Flutterby

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    Sometimes when you open a thread, read the first few posts and then jump into post a question/opinion, whatever you are asking most likely has already been answered, especially in such a long thread like this. As I said above. Its all a misunderstanding and was cleared up 40pages ago.
     
  2. swellman

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    I'm not attacking you personally, meaning I really didn't look at the the author when I responded. I am, however, singling out your statement as an example of what I feel to be a common sentiment in this thread. There have been more than just a couple of J&J/JDRF conspiracy assertions here. I believe you have to take responsibility for the implication of your statement - the implication that there was, indeed, impropriety related to the relationship you commented on. If you don't believe it then why comment? You have to admit there's an implied assertion there or, at the very least, a handhold for people who are prone to conspiracy to grasp onto. I honestly do not know your diabetes politics and am sorry you think I'm taking unfair shots at you but someone has to stand up and say "wait a minute" even if it's unpopular.

    And, on the topic, there's has to be a short list of capable CEO-level business persons who have extensive experience and a personal connection with T1 in this country and automatically excluding them from the position of CEO of JDRF based only on the possibility that a few people might see it as a conflict of interest is, in my opinion, short sighted.
     
  3. PatriciaMidwest

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    Perhaps you should come back later when you have time to read it yourself.

     
  4. simboss

    simboss New Member

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    thanks for the advice. I'll come back to it in the morning. ;)
     
  5. buggle

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    This isn't conspiracy theory -- far from it. This is what used to be considered basic ethics in this country. 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.

    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.

    And I'm not implying, I'm directly stating that I believe that Johnson being CEO of JDRF was an ethical breach. To me it's an obvious issue and it makes me question many of the decisions of JDRF.

    This whole direction towards corporate partnerships can be dismissed and justified in all sorts of ways. Even Harvard Medical School has come under scrutiny. Check out this article. This is absurd. Really, many of these researchers are nothing but marketing reps for pharmas as they go on the road giving talks and giving the marketing spiel. And they are nothing more than testing labs for pharma products. Research? Not in my book. I feel that JDRF is going down this road. Am I the only one who feels this is wrong?
     
  6. afau1990

    afau1990 New Member

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    I want to start this post by saying a few things:
    1. I have read this entire thread.
    2. I am a 20 year old with type 1 diabetes. I'm in college. I'm going to medical school in the fall, and I hope to become a pediatric endocrinologist. That goal is not despite of my diabetes- it is because of it. I want to do good. I am inspired by my circumstance. That does not mean that I am defined by diabetes- it just means that it's been something not entirely negative in my life.
    3. I am not a professional blogger, but I do follow many who have posted here on twitter and read their blogs- because it helps me deal with my diabetes and live successfully. One day, your children will need help existing as adults with diabetes. And these will be great resources for them to turn to, because they will be experiencing things that these adult bloggers experience and write about.

    Next... I want everyone to know how disheartening this thread is. I've never posted on CWD, but I read quite a bit of threads when I am seeking advice or encouragement- and I appreciate it all very much. The parents here are SO helpful. But tonight, I find neither encouragement nor advice. I find nasty words. I find rudeness. There have been attacks on parents. There have been attacks on adults living with diabetes. And frankly, it is all unnecessary and exhausting. What matters at the end of the day is that we are all in this together. We are all dealing with diabetes in some way- that should unite us, not divide us. Please remember that.

    I know that many people are saying that things have been taken out of context by adult bloggers, and that may be true. Sarcasm is often difficult to grasp in text, and while it may have been meant in the first few posts here... I will say that the first few posts left me hurt as an adult. That is not because I'm ignorant- it is because I didn't get the sarcasm. Now that I know what was meant, I feel differently. But, now these adult bloggers tweets have been taken out of context and placed in this forum. All of this is unnecessary and not helpful for anyone. It is hurtful. I hope it stops.

    As an adult living with diabetes, I am so refreshed to see JDRF reaching out to me. I am refreshed to see them focusing on my LIFE with diabetes. I want a cure as much as anyone else. The organization is changing- some see that as good, and some see that as bad. The way you see it is based on your perspective. When I was diagnosed at age nine, I probably would have been furious about the shift in focus- because I didn't yet have the perspective of how much I needed an organization to focus on research to support my life with diabetes- because I didn't want a life with diabetes. But my perspective is different now. I still do not want a life with diabetes, but that is the hand I have been dealt for now. And I am grateful to see an organization reaching out to me and appealing to my needs to maintain my health while I wait for a cure. If that is something you don't want to happen, then you have the right to choose a different organization to support. Many of those cure-focused organizations, such as the awesome Diabetes Research Institute, have been cited here.

    Parents here have been talking about how much it stinks to be up all night dealing with diabetes as parents or holding their child down to give shots while the child begs them not to. I don't have a child with diabetes, so I know that I can't understand how horrible it must be. I want to say THANK YOU to the parents. Thank you for doing what you do. I wouldn't be here without my wonderful mom and dad, who checked me nightly, who gave me shots and site changes when I didn't want them.

    But I want this to be said, too. It sucks to be up all night dealing with it as an adult with diabetes as well. It sucks to have to mentally prepare myself for every site change, for every huge CGM needle. It sucks to deal with all of this while low or high. And it sucks to do all of this while dealing with the everyday demands of adult responsibility. This is the perspective I know at this stage in my life. And I don't want that perspective to be lost from your minds, because that will be the reality for your kids in a few years. They will need your support then- and I'm sure they will have it, because if you're posting here, you obviously care a great deal about them. They will need the support of organizations- and thanks to JDRF, they will have it. And they will crave the support that they can receive from the adult bloggers that have been disrespected here tonight (and the bloggers were disrespectful, too, at some points- but that does not mean that their perspectives are not incredibly important). I know this, because I crave that support- I rely on it.

    I hope that everyone can see and respect the perspective that the adults with diabetes are bringing to the table here- if not now, perhaps when your children with diabetes become adults. I know it is hard- I spoke to my mom about this at length tonight. But...the adult type one perspective that has been displayed here is valuable. It may not be your perspective now, or ever. But that doesn't make it acceptable to bash.
     
  7. leeannthill

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    As with pretty much any dialogue, the comment of one does not equal the sentiment of many. I came to the thread via TuDiabetes, a community where ALL people touched by diabetes participate, because I was really happy with what I read in the diaTribe interview, and I wanted to share that I don't think JDRF's broadened mission is as bad as I've seen some people express. I didn't just see it here, but I've seen parents with whom I'm FB friends express dissatisfaction too. Since I think being part of the T1 community is a really important part of living with T1, I thought I could come here and share my point of view, presumably without being attacked, even if it wasn't a POV to which others could relate. As someone with T1, I thought my contribution to a discussion about JDRF's broadened mission, and what it may or may not mean would be considered just as valid as anyone's, even if it didn't resonate with others.

    Despite the hostility, name-calling, and sarcasm directed at me, which frankly, I find very hurtful, and wouldn't have expected from people I've always considered 'DOC peers', I've tried to be kind and respectful. If I said something that someone didn't like, something that made them angry, it wasn't because that was my intent. For those who directed anger at me for just trying to participate, that was mean-spirited and unnecessary. You might have a different position navigating this ship, but like it or not, we're in the same boat together. I didn't come here to "have fun". I wanted to participate because I thought I could contribute a different perspective from that of T1 parents.

    Not specifically directed at you, but several people suggested that I erroneously thought I was sharing something that hadn't occurred to parents. I didn't think I was telling you something you didn't already know by saying that your kids will be adults, but when we become upset about things, sometimes reminders from someone with a different POV can put things in a different perspective, and that's all I was trying to do. Maybe that was presumptuous, but it was far from malicious. Like today when I was so frustrated that my attempts at exercise have been repeatedly sabotaged by my frustration at not being able to figure out how to adjust my basal and food. My friends were there to remind me that they exercise and they struggled to figure it out, but they did it - and so could I. Sometimes we can all benefit from being reminded about the bigger picture. Maybe that doesn't apply to some people here, but maybe there's someone reading to whom it does apply.
     
  8. Sarah Maddie's Mom

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    You guys sure like to make drama. :rolleyes:

    This was a thread about the future of JDRF, but the last two posts have been all about the needs, sorrows and hurt feelings of the posters. Not sure why you guys are so ... needy, but could we stop talking about you and get back to the topic at hand, please?
     
  9. Flutterby

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    The tweets about us parents over here at CWD are all over twitter. Its not one person, or a few people, but a large group. I find it distrubing that adults can even act that way. Hope you all had your fun, stiring the pot. I'm glad us stupid little parents of CWDs are the subject of many blogs as well.
     
    Last edited: Feb 3, 2011
  10. PatriciaMidwest

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    You are speaking of Dr. Lewis, correct?

    My research shows Dr. Lewis was the CEO of Novocell, Not J&J.

    J & J provided venture capital to Novacell in 2007, along with 3-4 other companies.

    If this is who you are referring to he wasn't giving out a grant to his own company.

    Let me apologize up front if this is not who you are referring to. My JDRF history is pretty short, and I could be missing a critical piece.

     
  11. MHoskins2179

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    I've been dishearted about the direction of the JDF and JDRF for years, going back 15 years or more. Especially since as I became a teen, I was "forgotten" about and all that cure talk wasn't about me anymore and they weren't really interested in me. Instead, they just wanted to use my face as a fundraiser and promised something that I began to understand wasn't coming like they said it was. Not that they weren't researching and working toward it, but that it was overpromising.

    Lately, I've been encouraged that the national organization is reaching out to include more Adult Type 1s but also that it's finally realizing "hey, this cure thing is more complicated than we first thought" and we better do better than just keep throwing money at something that might never come. I like the idea of being more involved from the Adult side, to help represent the actual kids with diabetes and not just what the parents hope for (said with no disrespect at all). I think that what is happening on the technology and advancement front plays into the larger cure picture, and that it does fit with the overarching cure-all endgame just as much.

    The 50 percent you put into the treatment also overlaps with cure, but what may be cure focused may not overlap with the former.

    But all that said, I'm no huge fan of JDRF, now or especially historically. They have A LONG way to improve in my mind. I am suspicious of the pharma and industry relationships, and like the advice of others who've said ASK ASK ASK. Transparency is key, and I hope we're all asking questions as a community of voices to ensure that happens.
     
  12. Sarah Maddie's Mom

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    What in the world does that mean?
     
  13. MHoskins2179

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    That some members of the CWD audience they are formed to work for a cure for, are now grown up and advocating on the D-front. The JDRF historically hasn't had that capability to hear from that population like it does these days and that can be a powerful message for them to look at in considering how they approach their mission. It also goes to the 50-50 focus, as they're now seeing really for the first time those grown up CWDs who were told five or 10 years and felt let down when it didn't come to be. My perception, at least.
     
    Last edited: Feb 3, 2011
  14. wilf

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    Well put.

    Working to improve the lives of children and adults with Type 1 D is a very honourable aim, as of course is working towards a cure. I salute everyone who is working in the public or private sector towards innovations that will make my daughter's life easier, and that will hopefully in future help prevent others from getting the diabetes.

    If you want people to trust you then you have to be crystal clear about what your aims are, and where the money being raised is going.

    For example the Walk for a Cure can only be called that if all funds raised in the Walk are going toward that goal. By all means have other fundraising initiatives and events to raise funds for other goals, but if it's being called a Walk for a Cure then that's what the money being raised has to go to..
     
  15. PatriciaMidwest

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    Wasn't referring to you.

     
  16. afau1990

    afau1990 New Member

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    Sorry about that- I re-read everything and realized you may not have been and deleted my post, but not soon enough. My mistake!
     
  17. swellman

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    For what it's worth I would vote "yes" to changing the name of the fund-raising efforts - the walk, for example since I agree that it no longer represents the entire scope of JDRF. On the other hand, if put to the fire I would have to admit I really didn't care that they were a little creative to get the money.
     
  18. leeannthill

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    Well, I typically only go to Twitter for the #dsma which was about food tonight, so I have no idea what was said or who said what. If someone called you "stupid little parents" that's obviously out of line. It's unfortunate that ANY of this hostility occurred. I take it from your post that what others are saying on Twitter has been offensive, but this isn't Twitter, and despite whatever was said that is offensive there, it seems a couple of us have been trying to constructively engage here.

    I know it's OT because it's a technical question, but is there a way to delete my comments, including the quotes?

    EDIT: Oops, I figured out how to delete my posts, now I just have to figure out it that means all my quotes will be deleted.
     
    Last edited: Feb 3, 2011
  19. buggle

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    Robert Wood Johnson IV
     
  20. sooz

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    Wow..well for me..I'm not going to go back and try to find out who said it..but I agree with the person who said that it is one thing to not support JDRF but it is quite another thing to drag it through the mud and the President and CEO along with it. I obviously am no lawyer but some of the statements that have been made about JDRF and the President and CEO seem down right actionable. Wow again to the unsupported statements about unethical and illegal money changing. Such over the top claims are baseless at best and deliberately framed to be harmful at worst. Please reign in this kind of flaming rhetoric, if only for your own sake...you are putting yourself at risk with such reckless accusations...really people..we need to put this to rest. I am surprised this thread was not closed long ago...and just in case you are inclined to pick apart something Im saying..please dont...I am only here, reading, posting, living with a loved one with diabetes, just like all of you...Im here because I care...about my granddaughter, my daughter, your children, you. Let's put it to bed now. What has been said, has been said multiple times already..nothing good can come of continuing on. Blessings to all...
     
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