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JDRF Ad - Hypoglycemia

Discussion in 'Parents of Children with Type 1' started by Aaron Kowalski, Nov 2, 2011.

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  1. MHoskins2179

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    I didn't fear death-by-Low for most of my D-Life...

    As a child following my diagnosis at age 5, I simply didn't comprehend the danger that existed. My parents did, and have said as much that they feared it constantly, in large part because of my violent seizures that would come in mid-night no matter what they did. And my mom was a Type 1 diagnosed when she was five, so it's not like she didn't know what she was doing.

    As a teenager, I just didn't care. Within a decade, I'd been hearing about "a cure" for a decade and simply tuned it out. I wanted to be "normal." So, despite my parents best efforts, I rebelled and ran High. So, Lows weren't really an issue most of the time. That lasted for the most part through college.

    Then, after college, I got my act together and control was tighter. And I got married.

    And that's when it started mattering and becoming a real fear for me, because I saw firsthand how these Lows could come out of nowhere and not only take me out of commission, but allow me to lose control of myself and potentially hurt others - such as those I love. One was a driving incident. Some others have been at home, and my wife has been injured by my crazy hallucinating hypos where thrashing is common form.

    Luckily, some paramedics have been responsive and helped bring me back from the brink - at times where my wife couldn't manage to get the glucagon needle into me without taking a fist to the eye.

    No, it's not my greatest fear. And it's also not my mothers. You want to know what it is? Passing this on to a future generation, is our mutual fear - it's one she had herself that she saw materialize.

    But it ranks pretty close to 2nd on the list, if not being that second spot on the ladder o fear. And that is something that's always on my mind before driving and going to bed.

    That's what I fear, as an adult type 1.

    Maybe down the road, if complications become life-impacting, my fear might move to the High BG side of the coin. But not now.

    No one else is here to protect me or keep watch over me, because I'm 32 now. My wife does what she can and is a godsend, but I won't burden her with being a parent to me. My parents are in another state. It's up to me. When I fail it could be deadly not only for me but for others. Any piece of technology that helps alleviate that fear is a positive in my book.
     
  2. bnmom

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    I totally get where sooz, mommakat and mhoskins are coming from - my train of thought follows the same lines. The point of any ad is to grab attention, gain awareness and garner funds and support for a cause. That would not be accomplished nearly as well without emphasizing the potential danger because fear motivates - in advertising and in human nature.

    I agree with Emma that any entity soliciting funds should present accurate information. But I don't think the 5% is that outrageous a number. I believe death from lows are under reported. For example, everything I've read on Dead In Bed is predicated with a statement along the lines of how difficult it is to definitively attribute death specifially to lows because lows can't be determined postmortem.

    Given the people on this forum alone who report dangerous lows...extrapolate that to the less educated general public and less developed countries worldwide...5% doesn't seem that outrageous a stretch, if it is in fact a stretch at all. Even if intense scrutiny were to cause a downward adjustment to 4% or 3%...if your child or loved one falls within that percentage, do you really care what number is attached? I think that is what sooz means by the number doesn't really matter. Of course it matters in general terms, but when push comes to shove if your child died and that fell within a stated percentage of 2%...that 2% would seem way too high an acceptable margin to you.

    Death from a low is my greatest fear when it comes to D, it's the reason I sacrifice sleep and check my son through the night. It's the reason I breathe a sigh of relief when he's at a sleepover and I get that first call or text from him the next day. And it's most important to me because any other potential risk or problem with D becomes moot if my child dies. I think it's noble of Michael to be most concerned with passing it on to future generations, but I'm not so noble - I'm only worried about my own child right now.

    Regardless, whether or not anyone agrees with the stated figure, it's hard to dispute that the ad is effective in it's purpose. It is attention grabbing, so the JDRF has done it's job there. And I sincerely hope that at least one person of means or influence noticed it on their way to the comics section and becomes one more person concerned and supporting the advancement of potential technologies that might help all diabetics.
     
  3. hawkeyegirl

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    I think there is a divide here between logical thinking and emotional thinking. If you don't care whether the JDRF statistic is correct or not, there's really not much more to say about that from my perspective.

    I also suspect that the JDRF ad was only attention grabbing...to us. Who didn't need our attention grabbed.
     
  4. Timmy Mac

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    The reason I personally fear lows is how sudden they can be. I am aware that I have a higher risk of dieing from cancer. However, I know that if I go to sleep perfectly healthy, my chance of never waking up because of some rapidly forming cancer is pretty low. That is why lows scare me more. All it takes is one miscalculation...

    I really don't know if I support the ad or not. I mean, on one hand, it gets the message across that we aren't exactly like everyone else, and we DO have to be careful. I guess fear is also a good way to get money. But on the other hand, It could make people think we are going to die at any minute and that could mean we would get excluded from things normal people get to do.
     
  5. hawkeyegirl

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    I realize this. And JDRF doesn't have the studies to back up their statistic. That is my point. You apparently wouldn't care if they would have come out and said that T1s have a 100% chance of dying from a low, and that baffles me.

    Do you really go through life explaining away every statistic that you don't like in this way? Or do you look at the facts and react accordingly?

    Again. Again, again, again, given the recent studies showing that our kids should expect a normal lifespan, the statistic is very, very wrong.
     
  6. Sarah Maddie's Mom

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    Exactly.

    mts
     
  7. Lee

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    This is the same board that got it's panties in a twist that pop tarts didn't contain real freakin blueberries - yet we are A-OK with the JDRF pulling statistics out of their a$$ and using kids that have DIED for sensationalist journalism.

    Frankly, I am disgusted.

    Or should I just quote:
     
    Last edited: Nov 7, 2011
  8. Timmy Mac

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    They might be pulling these statistics out of nowhere, but I don't think the ad has any specific examples of people who have died from a low. I'm pretty sure the kid in the ad is still alive.

    That being said, saying cute kids are going to die really isn't the most moral of choices.
     
  9. hawkeyegirl

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    Yeah, but it really MATTERED to those who got Pop Tarts with no real berries. :p
     
  10. sooz

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    I generally don't look at statistics at all, just the opposite of what you are asking. I am not a scientist, I'm a grandma. I don't count statistics as "the facts" ..I consider the picture as a whole. If I were to look at the 5% statistic, I would prefer that it stated 95% of people with type 1 will not die from a low. I don't know whether JDRF has the studies to back up their statistic or not, and neither do you. You are upset over the difference in 1 or 2 % numbers, I am not. 100% of us are going to die from something that one is one I am sure of. I dont live my life worrying about that statistic either. to quote you "given the recent studies showing that our kids should expect a normal lifespan"...as you pointed out earlier, bike accidents, car accidents, cancer, etc. Do you discount that our children might get those too? You clearly dont understand my point, so thank you for at least trying. A dialogue is a good thing.
     
  11. sooz

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    Ok, there ya go, you got my point!
    :D
     
  12. hawkeyegirl

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    1. Do you care whether the statistic is accurate or not? In other words, do you think JDRF has a responsibility to be accurate when they publish such an ad?

    2. Did you read the earlier posts where people looked at the studies that JDRF cited and reported that they did not back up JDRF's claim?

    3. A difference between 2.5% and 5% is DOUBLE the risk of dying from something. Do you understand that?

    4. Do you truly not consider the odds of something happening when you worry about it?
     
  13. buggle

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    I really think this all comes down to a difference in personality and values. I'm a cynic by nature. I'm trained as a scientist. I expect people to be accurate. I go to all kinds of lengths in my work not to exaggerate and to be as accurate as possible. I try to do that in my personal life too -- though I get carried away with sarcasm sometimes. I consider myself pragmatic. I don't believe in anything supernatural. I expect evidence before I believe what anyone says. I question what anyone says and I question their motives. It's a big deal to me. So, I get annoyed with misrepresentation of facts, especially on something important to a lot of people.

    A lot of people have a real emotional attachment to JDRF and I completely understand why. I wish I could have an organization whom I trusted and believed in -- whom I felt had my child and your child's best interest at heart. I had my JDRF bubble burst from the very beginning when I started looking at diabetes research right after Brendan was diagnosed. So, I don't have the history that so many parents have, that hope.

    The people who do have that hope and belief will think the best of the intentions of JDRF. Those of who aren't that way will not. And as far as the individuals working at JDRF, I think they all have the best of intentions. Institutional behavior (the organization, not the people) is pretty predictable. I have a friend who is an expert in this area for nonprofits. They all follow a pretty similar track as they grow and become successful. Corporate influence is predictable as well. It's all just logic and human behavior.

    We'll all going to need to agree to disagree. Even curmudgeons like me want to have some hope at the end of the day. In fact, I feel that some of us who are disillusioned and cynical are that way because we have such high hopes and expectations and are bitterly disappointed when we feel that things aren't done as honestly and with as much integrity as we hope.
     
  14. Flutterby

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    The people in our local JDRF are great. When my daughter was in the hospital a few years ago. The office staff checked in on us and even came to visit her in the hospital. Even now that I'm not involved like I once was, they do call and check in, or email. An actually, those at the local level, their dedication and compassion is what kept me w/ JDRF for so long. I didn't want to believe what I was hearing, reading, and seeing because of the people at the local level. Those working at the local office levels are wonderful. I don't have that opinion for the higher ups/board members though.
     
  15. sooz

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    Sorry my posts disgust you. I thought this was a forum where people could discuss different points of view. The post I made about the blueberries was just supposed to be a friendly post that I thought might interest people on the off topics forum, made months and months ago by the way. I don't see why you felt you needed to post it in this thread. As long as we are saying what disgusts us, the term "got it's panties in a twist" is one I feel is disrespectful and says more about the person who uses the term than the people they are trying to insult. My whole point was one child dying from a low is one too many. If no one in the world knows that child died, except their broken hearted family, no one will ever raise money to try to prevent the next child from dying. I don't know how many of us donate to acne research. I don't.
     
  16. sooz

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    Karla, I think we should just leave it where it stands now. I don't want to say something I will regret later. I am sorry you feel that I don't understand your point of view, and I am sorry that you don't understand mine. Thank you for the dialogue. Reasonable people can have different views on the same topic and each can have some truth in what they say. Peace.
     
  17. swellman

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    Somewhat. I'm also not so naive to think that not every fundraising entity uses the "Puss In Boots Big Cat Eyes" technique in raising funds - it's a wash.

    I did and I saw what I think was an equal number of people who agreed with the 2-10% estimation. I think 5% seems like a reasonable estimate given it's over the period of a lifetime. As a scientist I'm not overly concerned with the 5% number. Whether it's pertinent to future or based on the past causes me little concern.

    That's pretty insulting. You might as well just ask "can you do math?" Especially considering the number of studies that mention "doubling" or "tripling" the chance of dying of this or that or lowering the chance of catching this or that. It sounds significant but in a lot of cases it's the difference between .5% and 1%, for example, and that's not huge in my opinion.

    I do. I know this wasn't directed at me but, my biggest fear is overnight lows in the presence of aggressive control - not whether or not my son gets invited to a sleepover. I also worry about automobile accidents, flying, perverts, and jumping off garages with umbrellas but the one thing that keeps me up at nights is whether or not I made the right call at bedtime.

    Your anger is palpable and, in my opinion, misdirected - you just can't be this pissed about whether it's 1% or 5% or 10%.
     
  18. MommaKat

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    I feel like there is a disconnect between funding characteristics of the past and the realities of funding today. The NIH and NIDDK currently fund less than 30% of all biomedical research, and JDRF does partner with many of those funding initiatives (as noted on the NIDDK type 1 diabetes research funding archive) in addition to the research funding attributed to the organization as a non-profit, or that funded in partnership with industry corporations. As of 2010, 73% of all funding comes from private sector (combined nonprofit and for profit funding sources), and less than 30% federal sources. I'll post some links to relevant sites and articles below as I think some members here might find them useful.

    This exactly. Yes, a number of people have analyzed the cited sources and feel the numbers don't add up, while others have analyzed the sources and believe that the numbers are within reason given the data. Sadly, that is how statistics work. (In fact, to be a total statistician, statistics can never actually be used to prove anything true - only false.)

    Stating that our children don't face the same odds is a matter of projection - one that I hope proves true for all of us, but we do not have scientific data of any sort to back up that seemingly reasonable supposition. It also fails to address the very real divide that exists in access to (still new) technologies including fast acting and long acting insulins, not just pumps or cgms - though the access divide for those technologies is even greater. Given the number of PWDs and CWDs who do not have access to the very technologies and treatments many here feel makes the 5% statistic unreasonable, are we really extrapolating the statistic to all PWDs?

    I respectfully disagree with this. As I look back at my own responses (even the one on deflected anger), those by Michael, bnmom, and others, I believe we've all contributed, though dissenting and minority viewpoints, from a position of logic.

    I wholeheartedly agree that, in regards to the statistic in the ad, it's a matter over which we respectfully agree to disagree. What keeps me coming back to this thread are the added issues and conversations that seem equally important such as research funding, and questions regarding to what extent JDRF research funding practices meet the expectations of previous and current supporters. Those are all important considerations, and with those newer ideas in mind, I wanted to post links to a few relevant sites and articles I thought people might find of interest.

    Federal funding
    Biomedical research funding comes from one of two inter-related sources, the National Institute of Health and the National Institute for Diabetes and Digestive and Kidney diseases (NIDDK).

    The National Center for Research Resources lists currently funded institutes by state along with a description of research areas.

    NIDDK - Type 1 Diabetes (T1D) Research - note the top box highlighted in green lists current projects funded by special statutory funding. JDRF partnered in more than 2/3 of the projects listed in this area, and both NIDDK and NIH specifically list JDRF as an alternative source of funding.

    Type 1 Diabetes Clinical Trials and Clinical Research - More from NIDDK, note some are also partnered with JDRF, for example anything with TrialNet is funded in part by JDRF.

    Report in Dec 2010 on efficacy of special statutory funding program

    Articles on state of funding in the U.S.:
    U.S. Budget Cuts Threaten Medical Research

    ?The future of U.S. science and technology?Bright or cloudy??
    by UMR on JULY 29, 2011


    Journal of American Medical Association: Funding of US Biomedical Research, 2003-2008 (also 2011)

    The Role of Medical Research in Healthcare Reform

    U.S. medical research funding falls: analysis

    Does Industry Funding of Clinical Research Create Bias?

    FDA forms expert panel to speed up device approval - talks about the FDA acknowledging problems with expertise, turnover, and length of time... 10/5/2011

    U.S. Scientific Research and Development 202: A Critical Look at the Federal Research and Development Funding System - link to full pdf report from Science Progress, July 2011

    JDRF and Research Funding

    Currently funded JDRF Centers - links to center discuss ongoing research at each.

    JDRF and Biotech or Pharmaceutical partnerships with name of project and phase in an easy to understand table.

    List of completed partnerships (recent)

    JDRF-supported research resources and funded / co-funded initiatives

    The bulk of federal funding occurs as a result of the special statutory funding, and JDRF has been a leader in garnering support for re-authorization of that funding, most recently in Dec. 2010 (see JDRF Special Diabetes Program History)
     
  19. Ali

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    This is an emotional thread. FWIW after 40 years as a T1 I would expect the number of deaths from a low either as a main or contributory factor in deaths to be at least 5 percent. I have lows below 50 regularly with a CGMS and with all my mental facilities and with a hubby to check. My big fear is being in a nursing home with marginal help, little insurance for extras, and dementia. I would be dead in a year. Yes life expectancy may be close to normal now days for T1s and the general public but I would guess it is below normal for those who eat as well,exercise as well, and visit the Dr. as often as most T1s. All they are saying is that as a T1 if you devote your life to controlling your T1 you can live as well as the average guy who does nothing. Or it says nothing about the fact that you may live as long but your quality of life is half as good as any one else. The amount of time a T1 spends to stay healthy is insane. It is a huge stress, burden, cost. If they can have any type of a AP that would help, frankly anything helps. :cwds::ali
     
  20. OSUMom

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    Michael though we disagree on what type 1 research charity we support or why we do so, I appreciate your perspective here and others who are living with type 1.

    I'm thankful we have choices and the freedom to donate where we feel led to give.

     
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