Replies to This Discussion

Permalink Reply by Kim on November 11, 2011 at 1:59pm

Hi Nick - I wonder if you've seen this? http://strangelydiabetic.com/2011/11/11/hello-jdca-im-part-of-the-85/

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Permalink Reply by Sue59 on November 11, 2011 at 2:32pm

Kim, thanks for the link-I've never heard of this blog, but I will be following it now.

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Permalink Reply by Kelly WPA on November 11, 2011 at 2:22pm

I also read the article that Kim linked. I agree with Scott. I think even though most of us would also like to see a cure happen, we also need to be able to live with disease until that happens.

Even there were a lot of people upset by that ad, there were also a lot of people that supported that ad. The JDRF explained how they came up with their numbers. I personally believe that number is higher than 1:20..

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Permalink Reply by MossDog on November 11, 2011 at 3:01pm

Improving Lives. Curing Type 1 Diabetes

I think putting Improving Lives in there they are clearly showing that they are not focused ONLY on a cure. Note that they also made it 2 seperate sentences, as in they are two seperate things. It certainly would not be a good line to say: "Trying To Make Diabetes More Livable. Finding Treatments For Complications. Curing Type 1 Diabetes." . How do you put everything they are trying to do into a nice little tagline that is easy to remember? I think Improving Lives does that pretty well, actually.

I can't wrap my head around why you would consider this blatant false advertising.

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Permalink Reply by acidrock23 on November 11, 2011 at 5:30pm

I disagree that the refocusing the JDRF is a problem and I would support doing more for treatment projects. I think the average A1C of PWD is something in the 9s? A "magic bullet" would be great and all that and I'll run out and buy one when the price/ side effects are right but I think there are significant dividends available by investing in changing goals flexibly so people can learn how to kick more ass and then go out and kick it.

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Permalink Reply by Kari on November 11, 2011 at 5:36pm

Quite honestly I appreciate their new direction. As someone who saw diabetes take a kidney, partial eyesight, two legs, and then finally life away from my aunt (who had been diagnosed at age 9, passed away at 50)....I appreciate anything that is done to improve our ability to control this condition and prevent complications.

I was 'promised' a cure 19 years ago, when I was diagnosed. I was told it'd be here 'in 10 years'. It wasn't. I don't hold out much hope that there will be a cure in my lifetime. Is it fair to put all the money into a cure that many of us may not live to see.....but put very little or nothing into improving our lives? Frankly, no.

We need balance. I applaud JDRF's mission.

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Permalink Reply by Terry on November 11, 2011 at 5:52pm

Kari - Well stated. Balance is important. And these two goals are not mutually exclusive. Improving people's lives could expose a path to a cure. Finding a cure will improve people's lives!

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Permalink Reply by Nick Masercola on November 12, 2011 at 8:30am

The way we look at this is sort of half an half.

While we are focused on a cure, we realized it's not the top priority for several other organizations. New treatments will not stop being created, and they shouldn't stop being created. I know my diabetes improved tremendously when I switched from shots to a pump, and am grateful minimed is still cranking out knew additions.

A large amount of our issue has to do with the methods of advertising they use to achieve funds for this end. For instance, they sponsor "Walk for a Cure," yet a cure is there secondary goal. More to the point, on average, barely ten percent of all the money gained from their fundraising goes to a cure, yet their messaging plasters the idea of one on all of there events. At best, this is misleading. At worst? Well...

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Permalink Reply by acidrock23 on November 12, 2011 at 9:19am

I did think the opulence of a Walk For a Cure Event I went to recently was sort of astonishing, buses from parking area(s!) to the starting line, inflatable ball pits, bands, stages, loudspeakers, etc. It made me wonder more about the administrative cost they'd incur but maybe that stuff all got donated anyway? It's fun to kvetch about but how else would we cure diabetes? Of course, now that we are out of Iraq, we could pour that money into a cure instead of cluster munitions and death benefits for soldiers. We could even look at a "long term plan" like "if we cure diabetes, we could sell the cure worldwide and regain some national initiative, perhaps we could RAISE TAXES to pay for it? Oh wait, we are the country that can't do that.

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Permalink Reply by Melitta on November 11, 2011 at 7:20pm

Hi Nick: I really agree with JDRF's new direction and re-branding. I think it is great they are moving away from the "juvenile" label and acknowledging the 85% or more of us adults who have Type 1. I have really appreciated their efforts to reach out to adults--I attend a JDRF-sponsored Type 1 women's group, and I am so grateful for it. I think that technology is going to be "the answer" before a true cure occurs.

I also don't have a problem with JDRF's ad in the NY Times and Wash Post, the 1 in 20 ad. Why do so many parents of children with T1 do blood glucose tests in the middle of the night? Because "T1 dead in bed" is a reality. Just because it is horrifying and scary doesn't mean we shouldn't shine a light on it (and while we are at it, let's look at diabulimia and suicide by insulin OD).

I have been quite critical of JDRF in the past, because I think a lot of the medical community's blindness regarding the frequency of adult-onset Type 1 diabetes was because JDRF promoted the "only children get Type 1." But JDRF's present moves and direction are positive in my opinion.

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Permalink Reply by Donna H on November 16, 2011 at 5:05pm

Melitta -- thanks for this. You and I share our obsession regarding the misdiagnosis of adult-onset Type 1 and it sounds like we also shared a critical view of JDRF. I know if you have observed JDRF moving toward embracing the adults with T1, I'm going to take another look at them. Thanks!

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Permalink Reply by Kim on November 12, 2011 at 9:53am

As someone who was diagnosed with Type 1 in my late 40s, I welcome the JDRF's acknowledgement of something they have surely known for years, that you don't have to be a child to be diagnosed with Type 1 diabetes.

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