I wrote a long reply to this, but thanks to a misplaced HTML tag, I lost a few paragraphs. Here's my second try...
Like many others, I have lots of thoughts on the JDCA, and here I will try to describe some of them. These are off the top of my head and may not be particularly organized, so please forgive me if it's difficult to follow.
Many people "outside" the D-community think that the worst part about diabetes is about giving yourself shots. If that were the case, I'd be overjoyed. In fact, I'd happily give myself ten shots a day if I didn't have to worry about estimating the carbs in my food, how much insulin I have on-board and how much I need, and whether, at any given moment, it's safe for me to drive, exercise, or sleep. It's the never-ending action-reaction process that makes diabetes so difficult, not the shots.
I read something yesterday (link here) about research for an injection of something that stops the bad T-cells from attacking the insulin producing islet cells. If I could take this shot once a day, and then my body could regulate and produce its own insulin until the following day, I'd take it in a heartbeat. At least I wouldn't need to worry about how DiaPep277 I need based on all of the different variables used to figure out how much insulin I need.
Is this a "practical cure"? I'm not sure. To be honest, I forgot what JDCA's definition is, but from an earlier discussions on TuD with Stoyan, I recall it's slightly different than my own.
In any event, I must confess that my initial impression of JDCA was one of arrogance. They seemed to take a stance that they had the absolute best approach, while dismissing other inputs. When I read the press-release admonishing JDRF's new logo, I was really taken aback. It had all the makings of a petty Republican-Democrat feud, with nothing particularly beneficial except for some self-promotion. But the Alliance is young, and I'll give it time. I also don't know what (if anything) they do "behind-the-scenes".
Perhaps the reason JDCA's press-releases aren't as well-polished is because it is run by volunteers (or perhaps very low-paid employees). I have every reason to believe that its leaders are nothing but dedicated, but there is something to the art of persuasion and communication. People spend years in college to learn this. I'm not quite sure JDCA has the best group of communicators on-staff. But keeping with its mission that 100% of the money raised go directly to the cause of finding a cure, I understand this.
Conversely, JDRF does spend money on overhead costs. Salaries for workers, expenses to print fliers and mailers, and so forth. Their employees are trained communicators, experts in how to get a message out and how to do it effectively. They also raise visibility for the cause, whereas an organization like JDCA mainly attracts the eyes of the folks who already have a rooted interest.
They are run like a business. If an employee of JDRF, or any private business for that matter, earns $150,000 a year, but his efforts produce an inflow of an extra $500,000 per year, is it worth having that person on staff? I'd think so. Hopefully, what they lose in adminstrative and overhead costs they gain in volume and efficiencies. Proving that is very difficult, however, and it's why big charities such as the American Red Cross sometimes get a black eye.
I contributed to JDRF when I participated in the Walk, and I solicited frends and family to do the same. Also, when buying my morning coffee at Quick-Chek, I was asked if I wanted to contribute $1 to JDRF, which I did in exchange for my name on a green paper-cutout foot that now hangs in the store. There are now thousands of those little red, blue, and green paper feet hanging at Quick-Chek convenience stores across New Jersey. If not for this campaign, those individuals would not have contributed, and the money would not have been raised. It's not like they would have instead mailed $1 to Massachussetts General Hospital. Even if only half of that money goes towards curing diabetes, it's still money that wouldn't have otherwise been raised.
JDRF also did something good for me in that walk. It brought people together. For me, it felt good and was empowering to see the friendly mob assembled for a common cause. It was an instant bond with lots of others like me. Plus, it got me to finally meet a neighbor, the one I mention in May in this blog entry. A bunch of people walking around a college campus doesn't help the pancreas per se, but for me it was good for the heart.
Having said this, I'm not out to attack the JDCA. I admire how its members have come together to promote the goal of a Practical Cure by 2025 over social media. I like that they not only want a "cure", but they clearly state what that means. I like that they solicit our thoughts, but am not sure they know what to do with them. But I'm not sure they're reaching the correct audience efficiently. Reports are great for politicians - they love them, and hopefully they will support funding and promoting research organizations that are truly working towards a cure. And the JDCA is still young. But the average person doesn't want to read reports, we want a quick synopsis of who (which doctors/researchers/organizations) are doing what (BCG vaccine, islet transplants, DiaPep277) to cure diabetes, and how (web links, contact info) to reach them. Given the JDCA's cause, that information should smack me in the face when I visit www.thejdca.org (along with the statement that JDCA doesn't accept or distribute donations), and it doesn't. But like I said, it's young and deserves some time.
Touching on another topic discussed here, I don't believe there's a conspiracy to suppress a cure - perhaps I'm just naive. I also don't believe that BG meters aren't more accurate because of lack of motivation by the manufacturers. There are many, many meters out there, and all are pretty much the same. Until now, they've competed on how much blood they require, much time they take, and now "alternate-site" testing (which is purely a marketing ploy, IMO). Accuracy is still up for grabs in terms of global domination of the BG meter market. (as an aside, I also believe that the circulation of blood, and the distribution of glucose within the bloodstream, will always result in some degree of fluctuation or inaccuracy).
I think I've spent too much time writing this, and I have to get back to work, so I'll stop here and maybe add more later on. In the meantime, I look forward to reading replies.