As you’ve no doubt read already, some feelings were hurt this week when the Diabetes Research Institute did a press release touting their new idea, the BioHub. It included a carefully edited 5 ½ minute video (that I’m purposely not sharing here), that finished by trying to give us the feeling that the only thing holding back their idea from becoming reality was the amount of money, or lack of it, that we could raise for DRI. Making the problem worse for some was a pre-release blog post from Diabetes Dad Tom Karlya, who stated in his title “This Could Be It… What We Have Been Waiting For Since Diagnosis!!!!”. Tom has since posted not one, but two mea culpas on his site post-release.
As I’ve alluded to above, there has been much wringing of hands over this thing, outrage at times, and honestly, if I weren’t so busy, I would include all of the links to those posts here. But if I may, let me just say two things about this ordeal, and then it will be finished for me, other than being a reminder of the power of the internet pen and a reminder once again to carefully choose my words.
First, let’s remember: We’re not any worse off than we were a week ago. My life goes on. I still have diabetes, yet I still look with a hopeful eye toward the future. Not so much for me, but for others who are younger than me. If I can do anything to help eradicate this disease from our planet, or make lives better while living with diabetes, I’m all for it. That hasn’t changed, and it won’t change, regardless of whether a momentary research and marketing (or is it marketing and research?) buildup succeeds or fails.
Second: For me, this entire episode seems to show just how remarkable, and powerful, this Diabetes Online Community that we all talk about really is. Remember Kerri Sparling’s words from that Morning Edition piece on National Public Radio back in December? Quoting from the story:
Blogger Kerri Sparling isn’t worried. She says the diabetes online community can tell when something’s fishy. “If we see someone swooping in with their chocolate shake that cures Type 1 diabetes, there’s going to be a voice raised saying, ‘Wait, wait, wait, that’s not true! Or, ‘Don’t come in and spam our community.’ We protect ourselves in that way,” she says.
Isn’t that what’s happened here? Sure… someone with a personal and a monetary interest in seeing DRI succeed got out ahead of a story and in some places, was vilified for it. This may not be true at all, but I suspect both the blog post and the press release on the BioHub were part of the same marketing package. I’m sure that as a result of what we’ve seen this week, both Tom and DRI will be very careful about how they pitch an idea in the future. That’s what is supposed to happen in a situation like this. On the other hand, if you read many of the comments on his own blog, you’ll see that there are many who support Tom and didn’t think they were mislead at all.
This is all good. We need diversity of thought to keep this thing strong. Whether it’s discord or disappointment, when these things happen we need to talk them out. Think them through. Not everyone will agree on every point. But the discussion will eventually bring us to a point where we’ll all be able to move forward.
Oh, and one other thing, and I’m not taking sides here: Don’t forget that ultimately, Tom Karlya’s goal is the same goal we all have. I still have my eyes on the prize. I’m ready to move on. You?
Comments
As we say here, there’s no such thing as “bad PR.” But how you spin it makes a world of difference.
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Totally with you on the “don’t spam Tom” aspect. Taking his excitement is subjective.
I blame aliens.
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