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

By: Zach Clayton

Zach Clayton — Thu, 07 Mar 2013 17:29:08 +0000

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.

By: Nicole

Nicole — Thu, 07 Mar 2013 03:21:03 +0000

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.

By: Moira

Moira — Thu, 07 Mar 2013 01:28:41 +0000

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,

By: karla

karla — Thu, 07 Mar 2013 01:08:16 +0000

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.

By: Moira

Moira — Wed, 06 Mar 2013 17:39:28 +0000

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.

By: Anne

Anne — Wed, 06 Mar 2013 17:32:08 +0000

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 :)

By: Jorie

Jorie — Wed, 06 Mar 2013 16:27:50 +0000

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)!

By: Katie

Katie — Wed, 06 Mar 2013 14:07:49 +0000

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.

By: k2

k2 — Wed, 06 Mar 2013 04:14:00 +0000

Outstanding post & YOU. ROCK.
Xoxo

By: michelle

michelle — Wed, 06 Mar 2013 03:14:40 +0000

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.