Hope without hype is all we ask (the one when I wish it started differently)

March 5, 2013By 29 Comments

Don’t let some hype rip hope from your hands.

Apparently, silence can be deafening. With Monday’s pre-announcement of some huge news coming the next morning from the Diabetes Research Institute, my in box and text messages and Facebook messages were binging like the pinball machine in “Tommy.”

What do you think? Why are you saying nothing? I’d chosen to hold my thoughts until I saw the entire DRI program released. And now it is out. So what do I think? In some ways, I want to keep to myself what I think. Because I don’t want to hurt feelings. Because I care deeply. Because some parts of this are icky. But as one mom beseeched me, “We depend on you, Moira, to be a calming and honest influence.” I built this reputation. I built this blog. And so comment I must. Here is what I think. (And yes, I am quite sure my children, husband and many friends are howling at the idea of me being calming! Or an honest influence):

I think hype and hope do not make great bedfellows. Because really, if you take the DRI plan for what it is; it’s really, really interesting. It’s also positive: whenever you have that many incredibly brilliant people get on the same page and pinpoint their focus on a goal, it’s good. Whenever you set out to funnel lots of funding into answering a question, it’s a win (even if the question is answered, nope, cannot do it; it’s answered. I learned long ago that in research, any definitive answer is a step forward). So really, DRI’s announcement should have made today a good day.

Note I said “good day,” not “historic day.”

And that’s where the hype came in. And where what should be a “good day” goes somewhat off the rails. I am impressed and astounded at how quickly the hype spread through the diabetes on line community – if you ever doubted the power of social medial, study this case – but what was being said made me queasy.

Somehow, the announcement that something big was going to happen just sparked something in people, particularly in those who are newer to this diabetes world. Moms and dads and cousins and friends posted about how they were not going to be able to sleep until they heard what the “big” was. The celebrated in advance with comments like “This could be IT!” and “Could be my best birthday present ever!” and “Finally, finally, the answer may very well be coming.”

I think they were responding to not the blog post about the “upcoming announcement” so much as to the headlines shared with it. I know from years as a newspaper editor the power of the headline and the wimpiness of the fourth paragraph mention. Some of the headlines were like this:

 

This could be …. What we’ve been waiting for since diagnosis!!!!!!

 

And

 

The world will change forever

Add to that DRI’s decision to take down their entire website for the 24 hours until the “announcement would be made” and you’ve got a whole lot of crazy going on. Folks who’d never heard of DRI read that something big was happening. They went to the site and … gosh: if a company takes their website down for a day, it’s got to be big, they thought. It’s just how we perceive things in this on line era.

But me? I didn’t know what to think.

And at first, I felt like a hardened, jaded freak. How, I asked myself, could I be doubtful? And yet  …. While I was excited to hear about some new path totally worth taking, I was not expecting to hear the world was going to change forever this next day. After all, I’ve been around this block. I’ve seen other really great research breakthroughs that would be reason enough to be celebrated on their own labeled as “the cure.” I’m lucky enough to be very educated (in a laymen’s kind of way) about lots of research (you can be too. Sign up HERE). So I know the dealio.

But a lot of parents don’t. And in a way, as I watched the hype build and build to a frenzy, I wondered if I’d lost the ability to hope.

But I do hope. Just not with hype. I donate and raise money and volunteer and help. I learn and listen and study and ask. And I do it with determination and confidence that I am helping make the world a better place for my daughter and for many.

That’s enough for me. The newer parents and patients – the ones who have not had the time yet to do the things I’ve been able to do (16 years of being a D-mom lends you that time)…. I was just scared for how they were going to take this. You could hear their voices from the screen. They were over the moon excited about what was to be. And for whatever reason, they visualized a cure. Or something absolutely almost there.

And yet, I doubted myself. Could it really be? (Yes… the hype started to get to me).

Then the announcement was leaked, via a news station video. And, as I had worried would happen, a great many people lost their minds. They are angry and divided, this diabetes community right now. Some are lashing out, others are saying they refuse to hope again. Others are supporting the messaging and saying people are just too overreactive. Others are saying they don’t like the DRI plan. Still more are asking if it’s time, again, to figure out what a “Cure” really means to the diabetes society as a whole.

The DRI VP issued an apology this morning, and I think that’s good.

But I also think we all, as a community need to figure out just how we message these things. Because, as I said, hype and hope just don’t make good bedfellows.

This should have been a happy day. The concept of some kind of way to replace islet cells and protect them via a “hub” is an intriguing one. One worth looking into. The team DRI has focused on it is a brilliant group. And had the DRI chosen to simply launch their updated website and put on out the message they sent out in their DRI Insider email that day, we’d all probably be happy and talking about how interesting and innovative and encouraging this is.

I hope this is a lesson to DRI. I know other organizations that fund research have learned this lesson in the past. Now it’s DRI’s turn.

Don’t play with our emotions. Don’t toy with our souls. Don’t dig into the very part of us that aches the most – the part of our hearts where we store our love for someone who needs a cure – and poke it with a stick.

Because doing that takes what should be a good day (not an historic day) and just turns it bad. . Let’s all make a vow to share and share often research news and information, but to do it with a calm grace

Now, on to learning more about DRIs program. No more hype. If we can push that away, we might just find some hope under there.

Filed in: AdvocacycurefeaturedGeneral HealthResearch Tags:

Comments (29)

Trackback URL | Comments RSS Feed

  1. Tanya Moder says:

    Well said Moira. I am hesitantly hopeful and look forward to more information. IF this works it may not be the “Cure” we hope for but IF it works it could help a lot of people.

  2. Kristin says:

    Amen to hope without hype.

  3. Lauren M. says:

    You. Are. My. Hero. (Next to Kyle, of course)

  4. Kim says:

    Have I told you lately that I love you?

    (And that I’m not actually Lionel Richie?)

  5. Matt says:

    Well said Moira. I was right there with you, extremely skeptical at first, but as I read more and more yesterday, somehow I began to find myself wondering, “What if…” Today’s announcement fell flat for me, especially after the hype. Sure it’s cool and somewhat encouraging to see smart people working on this, but it isn’t the radical departure from the trajectory of research we’ve been on that it was spun to be, which is precisely why it fell flat for me, and had me feeling a little down on the organization and some voices I’ve trusted for news and views in the DOC.

    Let’s hope we can all learn from this, learn from the research, and keep our hopes up that someday we will find the Cure we’re all dreaming of.

  6. April Zieger says:

    Maybe because, like you, I’ve been a D Mom so long (almost 10 yrs)I didn’t let hype get to me. But I was, and still am, excited about this. Any progress is good. Take this and embrace it, People. It’s the closest thing we have right now and it’s HOPE.

  7. Well said, Moira. Big ole round of applause going on here.

  8. Bennet says:

    Part of the hype is ignoring other progress encapsulating beta cells. Sadly it wasn’t just the VP. DRI sent out email with “the biological cure” in the subject. Hype then appears to be policy. We deserve better.

  9. Andrea says:

    I was cautiously hopeful as I checked to see what the big announcement was this morning. What I read this morning is exciting, something I’m eager to follow, and possibly consider if they can solve the anti-rejection drug aspect.

    But even though I thought I was being cautious, I still felt a little deflated. I guess I let that hopefulness shine through more than I thought. I am sure it fed off of the excitement of reading about the baby cured of HIV. The demise was in the teaser post and the buzz words used. I have read and reread that, I don’t think I was reading too much into it. There are multiple sentences that leads the reader to believe that it is a cure.

    I guess the BioHub could be viewed as a cure, it would remove the need for electronic devices and the thinking involved. (That’s pretty cool in my book and to get closet/fridge space back, that’s not dedicated to d supplies, an excellent bonus ;)) Again, potential but too far into it’s infancy and still too many questions for me to put any real hope into it.

    Has my opinion of the DRI or certain blog authors changed? Absolutely not, they still hold my highest respect and I think they’re pretty awesome. But I have been a little sad at some of the responses directed at them. We’re human and we make mistakes and like you said, there are lessons to be learned on all our parts.

  10. Serena says:

    Fantastic post, as always.

  11. Very nicely done. I decided not to click on anything yesterday, as I have heard it too many times before to even try to get excited. I wasn’t even slightly surprised when today’s announcement didn’t live up to it’s expectations. That’s okay with me. It’s still progress.

  12. Sandy Zellmer says:

    Thank you for this, Moira. This is EXACTLY how I have been feeling all day. It was heart wrenching seeing some of those parents so very hurt by this when it should have been a good day. I wasn’t one of them that sat up all night or cried or anything, as I am one that’s “once I see it…”, but it had me even wondering too what the big announcement was going to be since there was such a big hype with it. It’s a shame this was done in this manner. It was a very very cruel way they did it.

    I admire you more and more each day, Moira. You are one smart lady. :)

  13. Wendi says:

    THANK YOU from the deepest part of my soul! You are a wonderful, wonderful person and I look forward to learning and leaning on you, all be it virtually, for many years! :)

  14. Katie says:

    OK, here is how long I have been a D mom, and how attuned I am to “cures’ and “the real meaning of scientific progress” and “incremental but important” steps (in ALL diseases, not just diabetes… we have more than one thing going on in our family)

    Are you ready?

    I didn’t even know what this post was about, because although I do get all of the DRI updates, and casually glance at all kinds of things about diabetes, I just didn’t register anything earth shaking. So, I missed it all…

    And still have to go read about whatever tiny but positive step has been made.

    Now. Moira… that should make you feel wonderful. At least you had it on your radar. I didn’t.

    But it sounds like progress, and maybe a slightly new approach (to whatever it is – I still have to look)

    My purpose in life is evidently to make every other diabetes parent with a breath feel VASTLY superior. I do care, really – but don’t think I’ll wake up tomorrow to a cure. It will be a process. :-)

  15. michelle says:

    I like to think I dont very often get caught up in all the “hype” of this and that break through. But the delivery of this particular one had me going too. All I could think about was…”could this be IT” It seemed to promise something really BIG. I shouldnt be feeling let down…but I am.

  16. k2 says:

    Outstanding post & YOU. ROCK.
    Xoxo

  17. Katie says:

    Spot. on. This is exactly how I was left feeling after the build-up. I think, in the absence of the hype-filled build-up, the DOC would be feeling GREAT about the BioHub. I think it’s a great step forward, I do. However, the way things went down, I felt like I had been toyed with, and it left a bad, bad taste in my mouth. I hope the DRI learned its lesson.

  18. Jorie says:

    I read the hype and figured it was just that (but hoped otherwise). I remember not too long ago thinking a certain “1 in 20″ campaign was also too sensational and uncalled for. In the end, there’s a lot of tactics employed to bring attention to a cause we hold close to our hearts. Does it get people talking? Yes. But does it also discredit the person/organization doing the hyping, scaring, etc? It’s a balancing act, which is hard when the subject is one that touches us so deeply. Well written post, Moira (as always)!

  19. Anne says:

    Great post Moira. You hit the nail on the head. I’m fairly new to the diabetic community but have had some research background. My opinion… if there is a cure, we won’t just wake up and hear about it one day. Like any potenital cure, the bio-hub has many more years of testing and trials. The FDA will not approve something like this overnight.
    In this age of communication, we will hear tidbits along the way as trials are approved, recruited, finished, and as submissions are made, hearings are held and the FDA decides.

    I agree that the headlines played on the emotions of those who haven’t been exposed to the research process. I was very confused and then concerned when I read the posts you did about people ‘crying and shaking’ giddy with excitement’ ‘not going to be able to sleep all night’. It is unfortunate the way it happened. I think the VP was very excited about the research and probably didn’t take a step back to view his posts from a ‘layman’s point of view. Hopefully everyone will learn from this.

    This is the first time I have been to the DRI website. Some of the phrases on their website struck me as odd… ‘The best hope for a cure’ and ‘solely focused on a cure’. What does that mean? They want a cure more than anyone else, or other organizations are ‘wasting’ money on other things? I’m probably over-reacting but those phrases along with the really slick video that was fundraising at the end, makes me concerned that the organization is as much about the money train as it is about the research.

    Thanks for all you do, Moira! I always love your posts and really respect your opinion and advice :)

    • Moira says:

      Thank you Anne. I think that wording is there way of separating themselves. But to that you have to wonder: what’s so bad about funding outreach and education and support and better treatments? I support DRI’s research, I do. But I also know that it’s so important that we help patients and parents to see that they can live a full and wonderful life despite diabetes. And that takes funding other than “cure” funding. Like the APP, and better insulin, and programs to help pregnant women.. and more. I am dedicated to the cure, but also to helping those we care about thrive until we get there.

  20. karla says:

    I am one of those new d-moms, new even to d-blogs (6 months). Moira, you just saved me from a ton of sadness and grief if I had received that DRI message. My 7 year old was diagnosed two years ago and had my first DKA scare a few days ago. I am still going through “firsts” with my son and I hate it. I am a registered nurse and still am scared to death. Thank you for being there for me d-community. Moira-I love you and that great post.

    • Moira says:

      Karla — you do get to the point that you’ve been through MOST firsts .. and thesecond time is better. Not good. Just better. DKA SUCKS and I think is as emotionally draining as diagnosis OR WORSE …. you can find me on fb or here if you ever need anything,

  21. Nicole says:

    It was an underwhelming announcement in my mind. Interesting, but not a cure. A miracle would be a cure. Now that would be a banner day. We are nearly 6 years into our journey. We have learned, we have hoped, we have cried but in it all we have managed to keep ourselves focused on the end goal.

    I know from having every miracle cure pushed onto me for over 21 years with my own chronic condition (not T1D) that guarded optimism is a saving grace. It is OK to be skeptical, OK to not believe it all until you read it for yourself. Doesn’t mean one is not hopeful, just seasoned.

  22. Zach Clayton says:

    Great perspective. Over the past 13 years, my definition of a “cure” has changed multiple times. Because of this, I tend to be cynical (imagine that). I still have hope, but have come to understand that hype is used to grab attention.

    We will all get what we HOPE for if we keep our eye on the target – curing diabetes (in whatever form)for our loved ones and in the mean time, making their life better. We must also remember to keep ourselves together, keep everybody warm.. Oops – lost focus there for a minute.

Leave a Reply