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A couple days ago I posted a video introducing an organization called the Juvenile Diabetes Cure Alliance. It's a hip, smart group of young folks who (mostly) have Type 1 and are working to get what they call a "practical cure" by 2025. I like it, and watching the video made me think about where we are these days on our road toward a cure.
My personal feeling about a "cure" is that I wouldn't mind still having to do injections, wear machines, take pills, use a nasal spray... as long as whatever I'm doing actually controlsmy blood sugar. Smart insulin, artificial pancreas, islet transplants that require periodic "boosters"... fine. I think this is what the Juvenile Diabetes Cure Alliance is getting at. So what's the best way there? Donate money to a big, well-funded organization like JDRF? Or to a young and nimble group, like JDCA? Or to some specific researcher?
Anyone have thoughts they can share with me about this?
P.S. Since first writing this post, it's been brought to my attention that JDCA is entirely funded by its owner, Brian Kelly, and does not solicit donations. The video specifies that, and in my musings I forgot about it.
I think insulin was discovered in the 1860s or 70s and they were in a perhaps more desperate "race for the cure" until 1918, when it became usable.
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.
Thanks a lot for taking the time to write a very thoughtful and thorough reply on this topic. It's unfortunate that the message board had to go and eat some of your thoughts. Hate when that happens. Of course, thank you as well for taking a look at our little organization and being interested in what we have to say.
I'm glad that your initial impressions have taken on a bit of a transformation. As we are constantly developing our methods and means of distributing our message, there may be a hiccup or misinterpretation from time to time. It's good to know that people have patience to continue reading, and more importantly, questioning.
To me, I'd like to see above all that people begin taking a more inquisitive stance towards the prospects and realities of the diabetes charitable universe. Like you, I participated in a walk recently. It was the American Diabetes Association's StepOut walk in New York City sometime last November. The entire event, from the fundraising portion to the actual walk, made me feel that despite my disease I was extremely fortunate. I raised around $2,000 and walked with my mother, father, brothers and some more of my family. Seeing so many people walking across the Brooklyn Bridge on a beautiful day felt great. A big brunch with my family and friends in the Financial District after felt even better.
Looking back however I feel an overwhelming curiosity on just how educated many people there were on what they had donated to and how their money was going to be used. Obviously we can argue the semantics of StepOut to "STOP" Diabetes all day - but in the end I feel that the majority diabetics are going to favor the delivery of a cure over the promise of prevention. While I don't think everyone who visits us will end up reading our reports and investigations - though it'd be great if they did - both the JDCA and I desire a more expansive discourse pertaining to the progress of a cure and how the big charities are allocating their massive influx of funds as the disease expands in scale. Further, it's to help advise big donors - such as our founder Brian Kelly, who funds us entirely out of his immense generosity - where their money can make a difference.
All things considered I find the reports to be informative enough to not be considered simplistic and concise enough to not be considered a complete drag. I think a problem for us and pretty much any diabetic interested in cure news or progress is that there's so much news on the subject and it eventually becomes hard to really sort out through the static. What's working? What isn't? A community like TuDiabetes has an intense and passionate knowledge about these subjects. People such as yourself are clearly interested and willing to dig through the mass of peaks and valleys that come with this field of "hit or miss" kind of research. Our process involves trying to synthesize the aforementioned mass into something resembling an evaluation of the current landscape for all diabetics - new, old, donors, type 1, type 2, whomever. You'll also notice that most of our interviews have gone away from the usual formalities of a diabetes interview and more into an honest, hard look into what the current progress is and how things can improve.
In terms of the donation issue, I'm not sure how to avoid that assumption other than a tremendous font on the front page or tattooing it on our foreheads in the next video. I'd like to think the total denial or solicitation of donations gives us a certain uniqueness, but also troubles people's first impressions. I remember reading your blog post slamming our JDRF re-branding report (unless that was miraculously another Scott) and thinking about how I felt a little torn. That's what I really like about TuDiabetes, the JDCA and the DOC in general - I learn a lot by reading other people's thoughts. We want to encourage that kind of back and forth and hope that as we grow, so does the participation from people across our platforms. The great and easy thing is that all of the people involved in these sites have the same goal: a cure. The hard part is educating people and creating an innovative and constructive conversation on how we get there sooner rather than later.
Congratulations on your newborn son by the way. I hope his pancreas is happy, healthy and functional in all the ways that ours aren't haha.
I appreciate your response. Having to go through typing some of it a second time, I was a bit frustrated and some of my frustration may have indeed shone through on my message.
Yes, my views on the organization have morphed a bit. I'm still not quite entirely sure how you seek to define yourselves (in particular, what does it mean to "partner with donors"). At first, I thought you might be like a mutual fund instead of individual stocks. Rather than deciding for myself which recipient could best use my money to maximize return (a cure), I could invest in JDCA and you would allocate those funds for me. Clearly, now I see that's not the case. While I still think a "The JDCA Top Ten" link on your page might be a good place to help steer us in appropriate directions, it appears you don't want to endorse any particular charitable or research organization. You want to educate us to allow us to make our own decisions.
And that's fine, but the largest outpouring of donations doesn't always come from the D-community itself, rather it is from the family and friends of people with diabetes (of whom are greater in number, and for the most part haven't become dismissive of any realistic hope for a cure). Referring to my neighbor with T1, she raised an incredible amount of money during her first JDRF walk just after diagnosis. Family and friends were shocked and desperately wanted to help. The following year, the donations diminished as the donors moved on to other parts of life. I know of other people in which the names have changed but the story is the same. The ones giving donations don't fully understand diabetes and can't understand it like those of us who live with it every day. Thirty years after my diagnosis, some people in my close family still don't understand that there's more to it than "yes, you can have this" or "no, you can't have that". But they still would be willing to help -- but we need to simplify the process for them. Like those who want to invest their money but leave it to a fund manager to determine how to do it, I think the JDCA could be a great help for those who want to contribute to a cause, want to diversify (not put all their hopes on one researcher), but don't know how to make their contributions most effective.
You are right in saying there is a lot of news out there to sort through. I think I've become pretty good at identifying the scams (acai juice and the like) right away, but other stuff gets lost in the delivery (did I read about that one already? Is it worth my time?). Life is hectic, especially with a newborn son at home (as well as a 4-year old) and sometimes I just look for the "executive summary". By the way, do you have an RSS feed? I'd be glad to put a JDCA box on my Yahoo! home page near my favorite D-related blogs, so I can see when you've got something new to say, when I've got the time to read it. Usually, when casually perusing Facebook, I don't have the time to read a link to a report, and then I forget about it.
Oh, and speaking of blogs, when you mention a blog entry that "slams [y]our JDRF re-branding report", I think I know the one to which you are referring. That was indeed another Scott, not me.
I did enjoy watching the video that Emily posted at the top of this message. What struck me most was where you guys do your work - what looks like a small brownstone apartment in Brooklyn (yes, I know that's not really it) with charming brick walls and no real embellishments like in a conventional office. I still don't know if this is a full-time gig or something you do in your spare time, but I know that you are indeed dedicated as I see your responses come to commentaries like these (and the above-referenced blog) all the time. Also, the part in the video where your founder talks about his son being diagnosed struck a nerve with me -- that is my biggest fear. I can live with diabetes, but I don't know how I can live with giving it to someone else. How my parents handled my diagnosis (at age 7) is a mystery to me. I do hope both of my children grow to be diabetes-free, and if they are to develop it, that there's a way to stop it early in its tracks.
Thanks for your well wishes. I do honestly believe we're getting close to curing this thing.
I wish I could've been in that ADA walk (I live in New Jersey, not that far off!). Not necessarily for the money raised, but for the sense of community to myself and the awareness to the community. I've driven across the Brooklyn Bridge and taken the subway across the Williamsburg, but never walked across it. It must be quite an experience.
Talk about strange and fitting timing. Last night I saw I had received a package from the ADA. I had no clue what it could have been so I opened it with some curiosity. This was inside. I was really pretty surprised. The handwritten note was from someone at the ADA who said that the package had bounced back a long time ago (only a little bit after the walk last year) and she wanted to ensure that I received kudos for my fundraising efforts. I thought that even despite my most hardened skepticism that this was a nice and personal gesture by the ADA, so good job on them. Sometimes it's nice to just be patted on the back a little.
Your point about the families of diabetics and the like is an extremely valid one, and one that I sometimes forget to account for. I'm very close with my family and relatives but as you've said, no matter how well they know you, they almost definitely don't grasp diabetes and what it entails the way we do. We can't fault them for this - they don't have to deal with it - but it's hard to not become frustrated with the constant barrage of redundant of misguided questions. One of our reports dealt with the myths and misconceptions that hin... and why we need to be cognizant of their existence. Whether it is in regards to a cure or general treatment, clearing misconceptions pertaining to diabetes is a tremendous hurdle that we're all constantly trying to get over. I've only been dealing with type 1 for around 8 years now, but I wholly understand that this is no easy task.
I manage our social media accounts and work with some of our outreach. While I wish education could be one of our top priorities, I understand that a streamlined focus on cure news/progress and donor advisement is our main priority. I think in a perfect world we'd be a second step for many people who are trying to educate themselves about diabetes, specifically how the current charitable universe for diabetes is composed. I must say; thank you for your suggestions in terms of interface and interactivity in regards to our website and mission. We're always looking for ways to improve and inform people who are interested in us. Speaking of that, you can add us to your RSS feed. Check the top right corner of our blog: http://www.jdca2025.wordpress.com
It's good to know that Brian Kelly's story is one to which you, and surely many others can relate. The organization is truly a labor of love, aimed to ignite some discernable change. Considering I'm only turning 23 next month, kids are a little bit away for me. But I can't say that the thought of having a child stricken with diabetes hasn't crossed my mind. The very thought of it breaks my heart. I was "lucky" enough to be diagnosed at age 15, a point at which I had at least a little bit of a grasp on what was happening and how my life would have to change. I can't imagine having it happen to me any younger.
The walk over the bridge was truly beautiful - it always is. I will never tire of seeing that skyline. Unless you're scared of heights, the entire bridge is incredible. Love how the wooden planks on the ground shrink and expand depending on temperature, to the point you can see the water so far below you. Very surreal indeed.
Banting & Best would probably be turning in their graves If they saw the current and only treatment for type 1 diabetes is still Insulin. In nearly a century since Insulin's commercialization its baffling to me they still haven't figured out an improved way to treat diabetes. Yeah more gadgets but the core of treatment remains the same. Despite how anyone else feels to me it seems ludicrous that we still have to walk around battling BS all day long. It's so taxing on the mind and sole it's not even funny. I have no idea how anyone suffering long term like myself has any sanity left. It's cruel way to have to survive and I don't see it any other way then pure human suffering. Unfortunately once diabetic the only way to achieve peace is either a cure or death. I gotta believe people that are six feet under are at far more peace then I can dream of.
Running, martial arts, playing guitar, reading, playing with the dog, kibbitzing w/ people on Tu, Facebook, etc. also can be peaceful.
They also serve to motivate me to keep my BG on a leash. Tuning a guitar w/ low blood sugar can be ridiculous and it's important to keep some quick acting carbs handy, just in case...
I think I like your idea of fast acting carbs. Creamy and refreshing.
Well let me tell ya, no-one loves to eat more than me, I actually eat more than my husband who is 6'3 and about 260 lb. I have recently been put on insulin, the killer to me is the needle pricks, sometimes you feel it, other times you do not. Its cutting off the food with sugar that bums me out. A large bowl of chocolate icecream and such. However, I love veggies and I do eat right for the most part. I just figured it will all be in Heaven to have and I dont have a choice here but to eat right or eventually die as you say. Keep your chin up. Eating right is key but when your a young person its just so much harder if you ask me. Try to beef yourself up with some hope there, in at least we are still alive..thats a good thing right? have a good day!
I noticed that the question is cure and it refers to - what - type 1 or type 2 or both?
Type 1 one has been explored somewhat in depth and type 2 - well there is another story.
Type 1 is considered a pancreatic disease. Type 2 has to do with insulin resistance as well as liver mis behaving. It has been peddled that type 2 is also a pancreatic disease and just add more insulin or pound on the avandia /actos.
It troubles me deeply that when one looks into the matter; one sees that there are 85 per cent of diabetics are type 2 and exploding in quantity. 10 to `15 per cent are type ones.
Many of the research organizations are spending big bucks on type 1 and I assume they hope they can get double whammy and somehow cover type 2.
The exploding numbers of type 2's suggest something else.
I received report that supposedly shows that ADA pulls in 100's of millions of dollars and spends only 4 % on research.
I am told very few organizations are really chasing practical cures and approaches and most honestly admit they are driving type 1.
To me that is tragic. I see the artificial pancreas project will probably in my mind most benefit type 1 diabetes.
Until Insulin resistance, cause and reason for and better real time analysis tools are vailable to monitor a multi-organ - multi hormone human chemical plant, I doubt any rational cure will be available and hoping for a simple single silver bullit that kills vampires in a single stroke seems irrational when one considers all the aspects of diet/carbs; exercise and hormone miscues that current approaches to manage type 2 require to be worked - ie - metformin to hold liver glucose off.
You are right about the fact that a cure for T1 will be found long before a cure for T2 is even on the horizon. And you are right about multiple system failures, but the pancreas IS involved as well, so something that would restore pancreatic function is really relevant to T2 as well. A fully functioning pancreas would at least mitigate T2 symptoms, even though there are a lot of other issues that need to be addressed. So while the work on restoring or creating a new source of insulin DOES have relevance to T2; it just doesn't solve the whole problem.
I do agree that pancreas has role. In fact the pre diabetes diagnosis seems most suggestive that the problem is really multi organ set whereby:
a) Pancreas ages/interfered with, genetic/environmental whereby pancreas reduces basil insulin releases a small amount as well as small reduction of the main bolus.
b) adding to fun is liver whom for some reason ups the
the glucose release during the stomach/intestine idle point.
c) the operating point of the body when gut empty is now elevated from normal and skeletal muscles need to pick up even more excess glucose and seeing increased insulin resistance that also makes matters worse.
My beef with the just add more insulin thinking is that in end does not solve problem- you just cannot keep storing more and more glucose in a finite human body with finite glucose storage that can be saturated.
There is no infinite motion/infinite glucose storage biological systems contrary to the thinking.
In my own case, yes in the end after getting IR issues resolved, the cranky age ole body did /does need some insulin boost basil/meal bolus to make up for age/degredation issues but did not resolve the glucose saturation issues that shot me up to 13.3 a1c - that took metformin doses appropriatly timed along with careful carbs/diet control and hearty exercise.
I was 26 years on extra insulin approaches - glyburide, starlix, 75/25 - 26 units and all I got for the trouble was a body rotting out, hemoraghes on eyes and kidneys failing.
Getting liver nonsense shut down paved way to get situation under far better control. Insulin approaces alone NEVER did that.
The argument is not one answer over another, this organ or that but what blended approach will provide the best answer overall and stop the rot.
Notice - I did not say cure.
It is allways wise to carefully review data and research on related medical issues - diabetes types but the present over focus on the pancreas is distracting our efforts and I believe for type 2's been taken as far as it can, its time to look into all aspects of this problem and get the dam numbers down.
All types of excellent research has been going on backed up by mri spectography, bariatric surgery, starvation diets, lap band, liver - metformin research
has been done yet sits going nowhere like the finds from the Indiana Jones movie nailed into a box and shoved into a warehouse out of sight and type 2's rot out like always in ever increasing numbers.