Posted by Sandy Donchess on June 02, 1999 at 22:15:47:
In Reply to: Re: U. of Miami DRI Show me better news today posted by Mary E. on June 02, 1999 at 20:00:56:
Mary E., I am still befuddled as to why you've made some of the statements you've made in your posts. I don't believe that anyone is trying to belittle you for feeling great hope and optimism. I'm certainly not. I also don't think this DRI stuff is hype, and I doubt anyone else does, either. I wonder who you've corresponded with or talked to who makes you feel that way.
Like you, I'm a Mom of a kid with diabetes. He's 12 and his bgs have also been "all over the place". We've practically had to put him in a "hospital" environment at home, what I call a "test tube" - strict adherence to carbo limits, vigilance so he doesn't sneak food or "graze". Adolescent boys are often eating machines, and he is one of 'em. He wants to do what his friends do when they do it. He hates the lack of freedom.
I, too, hate this frackin' disease. I've lived with it for 30 years, and it's hell for me to watch my older son live with it at all. I agree that one day with it is one day too long. From the day he was officially diagnosed, I have felt that it was far harder to be a parent of a kid with diabetes than to BE someone who has it. I think all of us are tired of hyped reports and press releases. You ask for info, and they can't/won't give you more. The call for the dollar is usually there. It gets old and you get calloused/cynical about it. At least I do. But I still have to check things out...
I'm excited about the DRI trials, but I believe it's a "measured" excited because I'm old and jaded. We knew this was going on last fall. Dr. Eastman of NIDDK told me about it when I called to talk to him about diabetes research funding in general. I've spoken with a number of researchers who have expressed interest and hope in this as well. Capt. Harlan and Norma Kenyon ARE fabulous people. I've spoken with both of them, as a concerned parent and Type 1 person myself. They didn't tell me anything I didn't already know from published information, and I didn't ask them to, but it was great to get a sense of their commitment and drive and excitement. I called DRI to get the patient recruitment packet of info, and I got it and read it. To me, this isn't new news.
Am I hopeful as hell? Yes. Do I have questions? Yes. Do I have concerns? Yes. I've posted about what those are. I will do what I can to get my questions and concerns answered. For me, this is not the end of the road, even if these trials are wildly successful. Even the researchers more or less said that in the press reports we've seen. It's a great thing, in part, because they ARE REALLY GOING TO DO TRIALS. We've been hyped by VivoRX in the not too distant past, and by reports saying that other companies expected to go into clinical trials with possible cures or non-invasive meters or whatever "within a year" or "by the end of" a particular year. We're all burned out on hype and hope, or have adopted a wait-and-see attitude, but again, I don't think the DRI stuff is hype. I think THEY think it's well-measured hope.
The other thing is that I think you have had some very negative experience(s) with JDF that has made you absolutely vitriolic toward them. When I look at the list of currently funded projects in the US alone, I see names like Doug Melton, Bernard Hering, Alberto Hayek, Hugh Auchincloss, etc. These people are not "rats" as you have been calling them. That's a pretty broad-brushed condemnation of anyone JDF funds that ISN'T with the DRI. And the JDF does fund DRI. Ricordi and Alejandro are on the currently funded list. I don't know why you feel JDF has "pissed away" money on useless studies. Something(s) happened to make you feel the way you do, but I don't believe JDF is the "evil empire" here. You say they should have funded Capt. David Harlan. He was with the Navy when he and Kirk worked on this stuff, and they had it published in the Proceedings of the National Academy of Sciences in 1997. Harlan is now with the NIH. Government/military doesn't go to private non-profits for funding. They go to the government. Which is what Harlan and Kirk did. I don't see any evil intent in the JDF for this. As I said, I'm just befuddled by some of your comments.
I hope you understand that I'm trying to understand your perspective. I am interested in just about anything to do with curing Type 1.