Why was this funded?

Type 1 and LADA
21

The first thing I would say to that is that we don’t actually get government funding, nor do we accept donations. We are entirely self-funded by our founder. No one’s money is played with by us.

The second is that while we do research, it’s more investigative of other charities than anything scientific.

Thirdly, we function like no other diabetic non-profit. We believe most people donate with the hopes their money is going to a cure, but most of the time, there money goes into nothing like that. We hope to form an alliance with donors to get charity spending to change, and put more money into fruitful avenues for a cure.

If you have any other questions, go ahead and ask me or any of the other members.

Lastly, I like the sombrero lol.

22

okay then why complain about funding for someone else if this isn’t a desire or need for your organization???..

i wasn’t meaning to call into question the relevence of your group but to just point out that as you are complaining about the ‘good’ of another study someone could just as easily point out things in your orginzation that they may not agree…

me personally i feel you all are wasting everyone’s money whom is donated either thru personal or governmental means… i think the the money would be better spent of buyng insulin for everyone instead of chasing the carrot stick…
but this is my view and i am not questioning the relevence of your orginaztion or study just as you maybe shouldn’t question someone else’s…

23

Jeremiah: I didn’t take any offense to what you said, just as I hope you didn’t to what I said. I was just explaining the organization based on the criticisms you pointed out.

I do understand your point of someone could just as easily call out the relevance of something our organization engages in. And it happens. Not everyone’s going to agree with what we do, and quite a few people share your view.

The main reason I brought this article up, and spoke about it’s funding more than anything else, was that it brought nothing new to the table. It’s a “water is wet” study. Perhaps they started out with a much larger goal in mind, but aspects of the project fell through, and in the end, they had to publish something.

Things like that do happen. But as it stands, I just don’t really understand the purpose of this project, mainly because common sense could’ve figured something like this out. It reminded me of a study years ago that was funded, asking why PRISONERS wanted to escape from PRISON.

But then again, this whole thing is just a matter of a opinion, so I guess we’ll just have to agree to disagree.

24

Okay, so just to play devil’s advocate a bit more on this particular study and to ask a question about JDCA.

The conclusion of this study BTW, was that activity level was NOT a significant risk factor for glycemic control.

The formal objective of this study was:

“To evaluate the relationship between media consumption habits, physical activity, socioeconomic status, and glycemic control in youths with type 1 diabetes.”

Now I don’t know how “common sense” comes into play here (since it is often neither common, nor sensible). Science sometimes leads us down a counterintuitive path to come up with an explanation as to why.

Now for a couple of questions about JDCA.

How will you define a cure? Why 2025?

Is research into making the lives of those who currently have T1 diabetes “easier” (e.g., closer to not having to “cope” with it 24/7/365) valuable?

Is it also your belief that there are no synergies to be gained between research only directed at a cure and research directed to better chronic disease management?

Finally, help me understand how you “advocate” for cure-only research? Do you function as an alarmist watchdog for the donor community, or do you have a way to positively help donors and researchers come together for cure-only research?

Respectfully Submitted,
Mike

25

Hey Mike: No sweat, here’s the answers to your questions.

  1. Our definition of a practical cure is as follows:
    • For at least 1 year, a cure must:
  • Not require blood glucose monitoring beyond once a week
  • Not require carb counting
  • Not restrict a patient’s diet
  • Allow patients to sleep care free
  • Keep A1c levels between 6-7
    • A cure must be delivered through a treatment that:
  • If it is surgical, requires a full recovery of less than 72 hours
  • If it is pharmacological, requires no more than a reasonable pill and/or injection regimen
    • A cure, which may include a drug regimen, must not have side effects, or pose longer term risks, greater than current complications of type 1

Now, keep in mind, all of those are for the first year, with our expectation to have more stringent guidelines afterwards. But our belief is that if something could fit that bill, it stands a great shot at becoming the cure.

  1. Why 2025? A couple reasons. The first is that following FDA regulations, where drug testing takes 10-15 years before hitting mass market, nothing that’s in the pipeline now would come out much sooner than then. In addition, we set 2025 as a goal date because, quite frankly, no other organization has either a goal, or a list of qualifications as to what a cure should be.

The basic idea is, when we set 2025, with this set of restrictions, our efforts will be much more focused, and get us that much closer to finding a cure in that timeframe. It’s hard to find something if you don’t know what you’re looking for, or have a date you want it by.

  1. I’m going to combine the “not coping” and the synergies questions together. These questions are a bit more difficult to answer, as it depends on how you define chronic disease management. For instance, if you were to ask if we think money pouring into better pump supplies would help, the answer would be no. Generally, iteration does not produce revolution, and better ways to manage are just that–slightly simpler, easier ways of keeping diabetes in check, not eradicating it. Also, there is the issue of diabetic management being a large business, and curing diabetics would eliminate said business. I don’t mean this in a “corporations are evil way”, but it is a truth. If a cure were to come out, a ton of people in the management industry would lose their jobs, and as such, there is not a massive push to cure the disease in said industry. Of course, this is a large question, so if you want more info/have more questions on it, I’ll be happy to answer it further.

  2. As far as advocating, we are trying to build an alliance with donors to help their voices be heard. We’re pretty new to the scene, but our first small initiative was the creation of our donor action letters. Basically, if you donate to a charity and include this letter, they LEGALLY have to put the money where you ask for it, ensuring your money goes to cure research, while making things a nightmare for accounting. It’s our first small step to start influencing change.

Keep in mind, we are not enemies of the charities. We WANT them on our side. They’ve done a ton of great work over the years, and have helped raise money in staggering amounts for diabetes. We just want them to use the money they have in smarter ways. Last year, nearly 700 separate projects were funded for cure research ( out of the small 10 to 15 percent of funds that usually goes it). We believe that by casting the net that wide, your chances of coming up with anything of value diminishes.

We want charities to focus their efforts, put more money towards cure research, and be more selective in the research they fund. Many advertise that donations are going to a cure, but they’re not, and we believe that’s where donors want their funds put. Our hope is that by creating an alliance donors, we can create enough of an impact to change this spending, and help type 1 diabetics worldwide.

If you have any more questions, I’d love to answer them. Here’s the link to our website for more info as well: http://www.thejdca.org/

26

Mike, if you look at the JDCA website, some of your questions are answered there. They feel people are more interested in finding a cure and will donate money to that as opposed to general diabetes stuff. They don’t feel a cure will happen in the next 10 years. They also believe that you need to put a target date to work towards something as opposed to saying, lets find a cure.

http://thejdca.org/Beliefs_YK91.html

The founder of JDCA is the father of two Type 1s. If you have ever gone over and read the Children With Diabetes forum, the parents over there are a lot more interested in finding a cure than making this disease livable.

I really don’t understand why you question why someone advocates for something. I belong to the Diabetes Advocates and I speak up for the things that are important to me just as you would speak up for the things that are important to you. We may have different ideas as to what is important and that doesn’t mean that either of us is right or wrong – it just means we want different things. I don’t think anyone should have to explain why they advocate for something.

27

Wow, your responses blow me away! What’s wrong with this study? The outcome isn’t what you were looking for? they didn’t know the outcome when they started it. I’m a toxicologist, I do risk assessment-based research for environmental contaminants (like pesticides and solvents), so this study isn’t my cup-o-tea and I usually complain non-stop about “social” studies that don’t/can’t have hard statistical analyses… but this study actually had potential for some value.

Their CONCLUSIONS: Diabetes duration, socioeconomic status, and daily media consumption time, but not physical activity, were significant risk factors for glycemic control in youths with type 1 diabetes.



I’m not sure this is earth shattering or surprising. and I often equate (in my own mind) “socioeconomic status” with education, so that is where my questions would go - are “underprivileged” kids getting lack of care of lack of education on their own care?

Why did physical activity not matter? where they defining it wrong? Is it actually adverse? (When I was a 12 yr old diabetic, I played on the basketball team, the softball team, the volleyball team, the track team… and often that screwed up my diabetes either because I was traveling for an away game, or not paying attention or bruised up with some encounter on the court or field). Do we need to monitor education more than exercise? Do we need to monitor the types of exercise?

Not a bad study, in fact, I suspect rather valuable in the questions it brings up. A good study often has more questions that answers.

While others spend hundreds of billions of dollars looking for a cure that doesn’t seem to be coming, studies like this look for improvement of life and treatment.

28

I guess we both literally responded in the same minute lol. Thank you for also for coming up to help explain/ defend us. It’s extremely appreciated.

I don’t know the Diabetes Advocates too well. I’ll check out your website later today.

29

I read both the reuters article and the ADA abstract, and the conclusion was not at all obvious to me. I would have thought that physical activity would improve glycemic control, but both sites stated that the conclusion was that it did not. What’s wrong with finding that out?

Second, I think there is a balance between using money to find a cure, and making the lives of people who currently have diabetes better. I may not live long enough to see a cure, but I sure would like a CGM that more accurately tracked my BGs! Maybe I only have another 20 years to live, but that’s enough time to develop complications, and I don’t want any part of them. I’ve been having a spate of lows lately, and I sure would like a low-glucose suspend on my pump.

I know that parents of children with diabetes are very focused on finding a cure, but personally, I may not live long enough – I want to be comfortable NOW!

30

I just finished typing when I got the email you had posted but I figured I may as well post anyway.

Manny Hernandez, the founder of TuDiabetes & David Edelman of Diabetes Daily are the ones that found the Diabetes Advocates. I just joined this year.

31

Kelly,

I wasn’t questioning the need for advocating, I was trying to understand “where is the JDCA coming from?”. I looked at their website before I posted and I didn’t find the answers I was looking for. What that may tell you is you may NOT want to fund me to do your research - lol!

Thanks to both you and Nick for your quick responses.

I will say that I have a few concerns about making donations legally binding. I could be and probably am wrong (it won’t be the first time - not even today!).

  1. The whole thing sounds like an angry reaction to the JDRF's "change of focus".
  2. Won't the need to track, report and withstand audits add to the administrative costs and therefore reduce the money that goes into research?
  3. Couldn't directing the money be self-defeating by eliminating serendipity and valuable iterations?

What I have learned in my reading and limited research is that the immune response that causes T1D is complex; the “cure” is complex as well. Getting real answers to the unknown questions will help get there.

32

I am 84 years old use a walker have a severe balance problem do some chair exercises. My BG readings are excellent and I keep my mind active doing things for Tudiabetes, That study is rubbish. Reed

33

Nick,

That is a bummer. All I can say is, some people are better at writing grant proposals than others.

34

  1. I understand how it may sound like a reactionary tactic, but I promise you it’s not. The JDCA formed last year, and it’s only now that we’ve begun reaching out and communicating since now we believe we’re sturdy enough to start making a difference. From what I remember, the JDRF’s re-focus policy didn’t really become clear until February, but I’ll look it up to double-check.

  2. This is actually the first time I’ve been asked this question. Could it increase cost? Possibly. If the charity drags it’s feet in changing it’s money allocation, they would probably need to spend a little more to keep their affairs in order. However, even if the cost increased ( which again, is only a possibility based on charity reaction) it would be minor, and only for a limited period of time. Would it reduce the funds going into research? Very unlikely, especially considering the reason they’d be having accounting trouble is the fact that so much money is now being DEMANDED to go into research.

  3. For clarification: Are you asking if directing the money may eliminate happy accidents and discovery?

35

Nick,

I appreciate your responses, serious thanks!

I guess my question about validating where the dollars go still stands. Granted, charities have to perform some level of this today so they can show how the funding gets split between administrative costs and doing the work of the charity, but still it strikes me as one more step they will have to take in their reporting. Of course, this mostly applies to individual donations v. donations from grant givers/foundations, since these groups generally have their own criteria for what they will fund. I am perhaps naive here, but won’t researchers have to have mechanisms/people/processes (aka - increased costs) in place to be able to report, “we received “X” monies directed to cure research and here are the research projects where we spent that money?”

Regarding serendipity/happy accidents/directing the research to cure only.

I am concerned that directing money in this way pre-supposes an understanding of where the “cure” lies, when we don’t really understand how it even begins. IOW, I worry that the restriction may place blinders on both the donors and the researchers. Look at any prediction of where the world would be from 50 or 100 years ago and you will see what I mean. Does this help, or am I muddling?

36

I think I can see what you’re getting at. Basically, it seems the underlying question is whether or not this will create a sort of tunnel vision, where we’re just running towards a destination without taking the time to see if we’re taking the best path towards it?

I can see where the concern arises ( do we ever know if we’ve made the right decision until later?) but our argument would be that, currently, there are so many projects receiving such small amounts of funding ( with no specific goals or focus) that we’re getting nowhere fast. We’re treading water. We do believe that by narrowing the search with a goal date and these specific guidelines will help us get there quicker. Many people do not agree, but the way we see things, at this point, why not change the method, because the current regime isn’t working.

Also, keep in mind other research is not going to stop. Many companies that create new treatment products will still continue to do so, and heck, maybe one of them will stumble across something integral to a cure. But we believe that by allocating more funds to specific projects, our goal of a cure by 2025 becomes that much more attainable.

37

Oh contraire! I am inactive and have A1Cs between 5.1 and 5.4 consistently.

I used to be more active, but have found that exertion will cause BG problems for several days after, so I slowed down a bit.

38

I am incredibly active (distance runner and a variety of other activities) and in great shape. But my A1Cs have not always been great; I’ve been as high as the upper 9s in recent years. I am now down to 7.9 and using a pump again (which has helped…a lot). While increased physical activity definitely helps me be a bit more “in control” (possibly because I am paying closer attention to what my BGs are), it doesn’t change the fact that I don’t produce any insulin at all. I think that’s what angers me about studies like this - it almost implies that, hey, if you just exercise, you can almost “cure” your T1D. And that just isn’t the case. I’d rather see research that goes into finding either a cure or a better therapy for those of us with T1D who ride the glucocoaster.

39

i also wlays kinda question goals on dates for finding a cure, i mean obviously setting and attainging things is how we measure or accomplishments buts this disease has been on record for over 3,000 years, i think part of our problem in trying to figure things out is our own neivety in place of relevence of time, claryfing a bit we don’t even know how the disease is caused in the majority, but have fanitsiful goals of creating a cure because it is easier to envision how we would like to finish and the glory the comes with it rather the the tedious dogging paths that fail over and over again, but which are most important to finding out the numbers of the combination…

i agree with you that research is to splintered but isn’t that human nature mixed with greed.(recgonition and free enterprise leads to a resmbliance of indiana jones)… i think in my own skewed perception of the world if we choose to work together in steps maybe in a few hundred years there could be a cure and a cure for many different autoimmune ailments…

but things like religion will always get in the way(you know because who are we to play god, right…lol) only he/she should choose who gets a disease and who doesn’t, forget about mother nature and an organism’s will to survive. kind of like a rose growing in concrete if i could channel my inner tupac…

if we actually worked funneled money aand research to break down the human body step by step and regeneration i think we could get further step by step unlocking each door and completing the circuit but when one starts at a 2 starts at d and 3 starts at f, how do you draw the connecting lines and how do you know thats how they connect…

sorry for thew ramble but lastly i am also lately beging to question the relevence of a cure…here is why. if we aren’t allowed to pass away either by accident disease murder or nature, then aren’t we being inherently selfish and doing more of a diservice to our future kin and to the future of the human race in total…
if no one dies the people need land to live in where does the food grow we already have food shortages, access to cash becomes harder and harder becuase medicine will always be expensive so who pays for the future generations college fund, or braces, or etc.etc.
i think i could go on and on of the negative impacts of actually finding cures for disease…

and allowing mother nature to reuse my body for it’s own nourishment so i know i did my part in fertilizing the earth so my kids can grow food… isn’t that more rewarding than being hooked up to machines looking like mj craving for more drugs…just to be alive a little while longer…

let me end by saying i love insulin but i realize that i do have to die someday the debate should be how well can i live my life not how long can i live my life…(i.e. things like systic fibrosis and some surgery they get my only extend their life by only a few years, i feel it is worth it because the age of death is still usually pre 20’s, but if we are worried about extending humman life from our life expentancy of i think like 75 now to 80 or 85 i think is selfish)

40

Yikes, you got onto (somewhat) dark and interesting subject matter. I’ll debate for a little, but I don’t want to open up the can of worms that is “do diabetics deserve to live from a Darwinist perspective?”

IN recent years, most diseases that have plagued mankind have become treatable in some form of another. You ask if it’s selfish to keep pushing for a cure and extending life? From my perspective, if you can live to 80 taking care of diabetes, or get a cure and live to 80, the cure is the better option, and doesn’t mess with uh…“the order of things” as much as it may seem. It’s living the same amount of time, but much easier.