- advertisement -

Could it be...

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

Thread Status:
Not open for further replies.
  1. sooz

    sooz Approved members

    Joined:
    Dec 4, 2009
    Messages:
    2,330
    The world changed for me in that I'm just a little more cynical and a little more disheartened by the exploitive lengths that some organizations will go to to grab our charitable dollars. The actual fact is, his blog did generate a huge buzz and hundreds more read about the research and the organization than might normally happen. I agree it also caused heartache and backfired on them generally in negative opinions, but it certainly got their organization out here. :( :(
     
  2. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    You would think that the "article" that he's been "waiting 20 years to write" would perhaps warrant a series of follow-up blog posts about the research, the folks who have participated, the history of the project, maybe some prominent funders or profiles of the scientists... but no. Nothing. Now off to post about misdiagnosis, a tactic even my 15 year old understands as deflection. :rolleyes:

    Personally, I don't feel "let down", I feel manipulated, which in my book is far worse.
     
  3. Christopher

    Christopher Approved members

    Joined:
    Nov 20, 2007
    Messages:
    6,771
    Interesting.....

    From the BBB website:

    Diabetes Research Institute Foundation (DRIF) does not meet the following - Standard for Charity Accountability.

    Standard 19: Cause Related Marketing - Clearly disclose how the charity benefits from the sale of products or services (i.e., cause-related marketing) that state or imply that a charity will benefit from a consumer sale or transaction. Such promotions should disclose, at the point of solicitation: (a) the actual or anticipated portion of the purchase price that will benefit the charity (e.g., 5 cents will be contributed to abc charity for every xyz company product sold), (b) the duration of the campaign (e.g., the month of October), (c) any maximum or guaranteed minimum contribution amount (e.g., up to a maximum of $200,000).

    DRIF does not meet this Standard because, in the past year the organization participated in promotions for the sale of consumer goods that indicate that the organization will benefit from these purchases. The promotions, however, did not specify:

    The actual or anticipated amount of the purchase price that will benefit the organization.
    The applicable maximum or guaranteed minimum contribution that could/will result from such sales (for example, up to a maximum of $200,000).
     
  4. swellman

    swellman Approved members

    Joined:
    Jul 30, 2008
    Messages:
    3,544
    Apparently, we are in the minority 30%ers who misunderstood his excitement.
     
  5. Jen_in_NH

    Jen_in_NH Approved members

    Joined:
    Jan 12, 2009
    Messages:
    437
    Well, I'm one of the folks that misunderstood his excitement.....:mad:

    I'm annoyed with myself, as I actually let myself hope that this was finally it. I read a ton of different stuff on d research, and know how far they've come and how far they have to go, but I spent an evening hoping there really was something that new and important.

    I see this whole episode fairly cynically now, and think it will really have a negative impact on their fundraising. People will not take kindly to having their emotions played on like that.
     
  6. JamieP

    JamieP Approved members

    Joined:
    May 30, 2012
    Messages:
    77
    I have no idea what that could be. I looked and its the 2010 financial on the BBB site. I found the 2010 Form 990 and I didn't see that loss anywhere. Maybe its a related party transaction with the DRI itself and therefore, not deductible. In that case, its probably not a real loss either. Maybe they advanced funds to the DRI for a project and then forgave the "loan"- just guessing though.

    I was thinking along your lines above as well. I wonder if donations to the JDRF that are then passed on to the DRI would bypass the foundation? I know the JDRF is one of the primary resources for the DRI.
     
  7. Mimi

    Mimi Approved members

    Joined:
    Dec 19, 2008
    Messages:
    1,906
    Anyone know what DiabetesDad did for a living before being employed at the DRI Foundation?

    Just curious as to what qualifications he had to get a high paying job as a vice-president, aside from having two kids with d. Because hey!....I have two kids with d, too! ;):p

    (I'm not insinuating he's not qualified or anything...just truly curious.)
     
  8. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    I believe he was, and perhaps still is, a working actor.

    He may well have had other professional experience, I just know that his acting career is mentioned on either his blog bio or the DRI bio, probably the blog
     
  9. Beach bum

    Beach bum Approved members

    Joined:
    Nov 17, 2005
    Messages:
    11,315
    He was also involved with DLife a while back.
     
  10. Beach bum

    Beach bum Approved members

    Joined:
    Nov 17, 2005
    Messages:
    11,315
    This was a thread that was really making a statement about how poorly the announcement was handled. until the comments about his non-diabetes related work became involved.

    I know most of us are still stinging from the "big announcement" and it was cheezy how it was handled but it's hitting low by making comments about what he does outside of his diabetes related work.

    I'm in no way sticking up for this guy. I'm sticking up for all of us who have posted our displeasure about the blog and the so called big news. It takes away from the well thought out and thought provoking comments that were being posted.
     
  11. Jeff

    Jeff Founder, CWD

    Joined:
    Jun 1, 1995
    Messages:
    1,549
    It's one thing to express opinions about the content of someone's blog post. It's another thing entirely to resort to personal attacks. That will not be tolerated, and posts of that nature have been removed and will be removed.
     
  12. Megnyc

    Megnyc Approved members

    Joined:
    Nov 8, 2012
    Messages:
    1,373
    I think what hurts me the most is I feel like he (and all the other "diabetes bloggers") is one of us. And in fact at least comparing my parents to myself it may be harder to be a parent to someone with diabetes then the actual person with diabetes. The fact that he was so willing to manipulate (and at the end of the day that is exactly what I believe his intent was--- manipulate us for money) us, a family he is a part of, just for donations is very upsetting and quite frankly a tad bit scary.

    People may not like to hear this but at the moment my family's very limited resources are going towards charities working towards making sure no one dies for lack of insulin (idf- life for a child is one). I had a cancer that has a median survival rate of 5 months regardless of treatment-- I know how ridiculously lucky I am. Fortunately, diabetes, while difficult is manageable with insulin and I know how lucky I am to have insulin. At this point in time I am more concerned about ensuring everyone has access to insulin then funding a "biohub," that seems unlikely to ever be accessible to the vast majority of people with diabetes on this planet.
     
  13. schnoodle

    schnoodle Approved members

    Joined:
    Feb 28, 2013
    Messages:
    25
    He is an actor and producer. http://www.imdb.com/name/nm1887174/

    I do not know what to say about this whole business. As you can see from my new signature I have an identical twin with diabetes. She has been diabetic for 20 years. I have so many feelings of guilt surrounding diabetes. I feel guilty for not having diabetes, I feel guilty for being relieved that I have not had the burden of living with diabetes.

    I read this thread on March 4th and read the blog and I did get excited. Later that evening or the next day the news had some teaser about a medical breakthrough. I was really excited and waited for the news item to come on. It turned out to be about a baby who's HIV had gone into remission due to a new treatment approach.

    Anyways, I am happy for the HIV community, but sad for my sister.
    I also feel scared that I will develop diabetes someday, and I always tell myself it is only a matter of time before I am diagnosed but that just makes me bitter. (I feel guilty for not wanting to get diabetes, like I am somehow selfish.)

    If we could take turns having diabetes I would be willing to accept that.
     
    Last edited: Mar 6, 2013
  14. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    Jeff, I hope that you will take an equally strong stand for those here who feel wronged by having being misled. Some of us long-timers know by now that any such announcement is merely hype to raise donations or stock prices, but I've been in touch with a couple of parents of newly dx who were really affected by this situation.

    Tom could put dampen reaction to his Monday post by: Updating his facebook page (http://www.facebook.com/pages/Diabetes-Dad/146258378750861?fref=ts) to disclose there and in his posts promoting the DRI that he is an compensated executive of the DRI Foundation - not just one of us "diabetes dads", and by acknowledging that his Monday night post was not merely an unfortunate choice of words, it was indeed an attempt to create a viral reaction in the D-world intended to draw visitors to the launch of updated DRIF website. A true apology (which the post on facebook was not) would help a lot.
     
  15. Christopher

    Christopher Approved members

    Joined:
    Nov 20, 2007
    Messages:
    6,771
    I agree with you but Jeff is in a tough spot, since this website is taking money from and promoting the very company that Tom works for. I know what I would do, but I am not very good at playing politics.

    The other problem is that I don't think you will ever get a "true" apology from Tom because I honestly don't think that he believes he did anything wrong. And that is sad.

    I just read the comments on the link you provided, wow. Now he is becoming a martyr. Unbelievable.
     
    Last edited: Mar 6, 2013
  16. moco89

    moco89 Approved members

    Joined:
    Mar 1, 2008
    Messages:
    2,430
    He *just* apologized on his "blog". Personally, I could care less. If he really cared about his job and the harm he did, he would take down his blog. He is representing his employer while he *serves on the board* through a *personal* blog. I do not know how more unprofessional an individual can be.

    This guy needs to stop blogging about diabetes in general and posting information about diabetes on the internet, on his personal webpages.

    I feel horrible for those (and family members) that are relatively newly diagnosed with D who read the garbage and misinformation the OP posted.

    Anyways, a cure is a very subjective definition, especially with the functional problems associated with diabetes. Even if the autoimmunity aspect and islet cell replacement is conquered, there are feedback loops that are compromised after an individual is diagnosed with diabetes--such as the human body releasing glucagon (naturally) in response to low blood glucose. Even with a "cure", "issues" will still exist.

    Unless we can have devices or nanoparticles (that exist in the human body-such as circulate in the bloodstream) that can outperform the biological processes of the human body as we presently know it, I do not know of a possible "cure" that will not have significant problems.
     
  17. swellman

    swellman Approved members

    Joined:
    Jul 30, 2008
    Messages:
    3,544
    OMG Really? I mean REALLY?

    I don't know squat about PR or at least I never thought I did but I know enough to comprehend that throwing up the "PEOPLE TOLD ME THEY WANT MY CHILDREN TO DIE" flag, even if true which I have no reason to believe it's not, would completely come off as a pity play.

    Yet, the hook sank.
     
  18. moco89

    moco89 Approved members

    Joined:
    Mar 1, 2008
    Messages:
    2,430
    He should get rid of the blog and the facebook page.

    Problem solved.

    I understand he is passionate about a cure. But representing your employer on *personal* webpages is just dangerous territory, whether the information is accurate or not.
     
    Last edited: Mar 6, 2013
  19. KatieSue

    KatieSue Approved members

    Joined:
    Oct 5, 2010
    Messages:
    921
    I don't know how non-profits work, but I work for a public company. Any major company news leaked like that could easily mean jail time from the SEC. At the least it's quite unprofessional.
     
  20. swellman

    swellman Approved members

    Joined:
    Jul 30, 2008
    Messages:
    3,544
    I'm pretty sure there's no stock involved so ....
     
Thread Status:
Not open for further replies.

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice