Would you donate to the JDRF after learning this?:

After learning that the JDRF refused to give a mere two million to the Denise Faustman research program, despite their $137,000,000 annual layout, I sent this letter to all on my mailing list. Your thoughts?

An open letter to my friends,

Something terribly wrong is going on behind the scenes. It’s taken me years to fully understand this, but it’s really quite simple. Big industries, like healthcare providers, pharmaceutical companies, major food producers, and yes… even some charity organizations, apparently are not interested in your health. My own experience has demonstrated that doctors, in particular, are neither all caring, nor are they all knowing. In fact, they tend to be egotistical know-it-alls who are more interested in mollifying the patient and garnering the almighty dollar instead of what we expect of them… to cure us. My friends, we (as a society) have been brainwashed, if you will, by these industries into thinking they truly care more about us than making money. I could go on and on, but if you bear with me, I’m going to give you a prime example of how one organization, in particular, has succeeded in raising billions of dollars (yes, billions with a ‘B’) through charitable, tax exempt donations under the guise of a campaign to cure an insidious disease that plagues hundreds of thousands of people, many of which are children, while failing miserably to support one of the most promising research programs designed to cure one of the most destructive, merciless diseases I know of.

The disease I’m referring to, is type one diabetes. It’s also known as ‘juvenile diabetes’, ‘T1DM’, or ‘insulin dependent diabetes’. I’m a type two diabetic (a totally different disease with similar outcome), and while my initial interest in type one was marginal, it has become more and more of a passion as I have befriended some people with type one diabetes (or have children with type one) while pursuing more knowledge on my own disease. One person in particular, Allie Beatty, www.alliesvoice.com has succeeded in making me all too aware that something very suspicious is going on. In a nutshell, one of the most promising research programs seeking a cure for this horrible disease, has been snubbed by the nation’s leading fundraiser who’s mission statement claims: “DRIVEN by the needs of people with diabetes, the mission of the Juvenile Diabetes Research Foundation International is to find a cure for diabetes and its complications through the support of research” (italics and bold print provided by yours truly)

The charitable organization I’m referring to is the JDRF (Juvenile Diabetes Research Foundation). I ask you, how can this organization, who claims to support research, fail to contribute to a program which has clearly demonstrated that it can reverse the disease in lab mice? This research is so convincing, that Lee Iacocca*, whose wife, Mary, died from complications due to type one diabetes, contributed his name and his money to the program. Yes, the research may have some flaws and snags according to some sources, but I ask you, “What research program doesn’t?”. There’s something more to this.

The researcher, Dr. Denise Faustman, MD, PhD, an associate professor of medicine at Harvard Medical school, has been researching autoimmunity (where the body’s own defense mechanisms, or T cells, destroy certain tissues of the body) for over a decade. Type one diabetes is a classic example of an autoimmune disease. Most often, in early childhood, this disease strikes without warning. Viciously attacking the insulin producing cells of the pancreas.

My friend, Allie Beatty, is not stupid. In fact, she’s one of the brightest and most well read individuals on this subject that I’ve ever had the pleasure of meeting. She’s so convinced of Dr. Faustman’s research, that she’s volunteered for the human trials. I strongly encourage you to hear her out: www.alliesvoice.com . I can think of no one more dedicated to finding a solution to this wretched disease than her. If you’re contributing to the JDRF, I would encourage you to stop and think about this… really hard.

If you care enough to right a wrong, I strongly urge you to forward this to all your friends, diabetic or not, simply to make them aware that all is not as it seems when it comes to charitable organizations. If you would like to support Dr. Faustman’s research, go here: http://www.faustmanlab.org/research.html and click the support link at the bottom.

Meanwhile, you can write the JDRF here: http://www.jdrf.org/index.cfm?page_id=101007
And ask them why they can’t part with a tiny fraction of their annual outlay to support Dr. Faustman’s research. Always remember this, so called support organizations whose existence is dependent on sympathetic followers, DON’T WANT a solution to the problem that fostered them in the first place… that would eliminate their justification for existence. Wouldn’t it?

If you would like to learn more, I suggest you read this: Wikipedia page on T1DM

Thank you for ‘listening‘ to my rant,
Craig B.

  • Lee Iacocca is famous for bringing us the Ford Mustang and restoring health and vitality to an ailing Chrysler motors.

Actually, the JDRF tried to replicate Dr. Faustman’s findings and could not. That is why they declined to give her additional funding. Now what does that really say?

Yeah, in fact I would donate to the JDRF, even after learning this. Next question.

Landileigh is right. JDRF was one of the initial funders of Faustman’s research and Faustman herself has chaired on their scientific committee. I happen to know the people who are on JDRF’s lay review committee, the ones who are deciding on this research along with the support of medical council, and a significant majority of them are parents and family members of people with type 1 diabetes. These are not just suits.

I STRONGLY disagree with Allie’s claims that JDRF is out to harm people with diabetes and I would say she’s hardly the only intelligent person in this community. JDRF supported Faustman’s research but in subsequent studies to duplicate Faustman’s research - which is crucial in funding a project - the other sites were unsuccessful. Thus, JDRF decided to focus their money on other causes.

Faustman is not the only researcher who has made promising advances towards curing diabetes and to place all your cards on her is stupid and short-sighted. JDRF is also one of the largest contributors of the Diabetes Research Institute, which has been making great advances in understanding diabetes from beginning to end. Just because JDRF does not fund this one project does not mean that the dozens and dozens of other projects they DO fund are not just as valuable and valid as Denise Faustman. She is one option - an option that is not PROVEN. You think she has the answer, you do not know for a fact. To make claims that JDRF does not deserve donations is undermining the success of every other clinic and researcher that receives JDRF grants. That is doing all of us a disservice.

Sounds to me like they didn’t want to replicate the findings for fear that they would all be out looking for a paycheck elsewhere.

Two mil is hardly “all of your cards”. No one here thinks Faustman (absolutely) has the answer. No other researcher has “proven” much either, yet they continue to get large donations. Sorry, but there’s much more going on here than meets the eye. Whenever there’s money involved, you can be assured that those who are making the sums of money the corporate heads of JDRF are, will insure that they continue to make it. (Can you say pharmaceutical industry?). If you think for one minute that the leaders of JDRF are altruistic, then I suspect you similarly believe that our government leaders are looking out for you as well. I hope you’re right, but my 57 years of experience studying human nature as pertains to money, have made me a bit more cynical. Case in point: JDRF investigation

Well, that kind of thing can happen in any organization where there are a lot of dollars flowing thru it. Remember The United Way scandals a few years back? Sarbanes-Oxley regulations are a result of the type of corruption that can occur with lax oversight and lots of money. Although, I think the jury is still out whether or not those regulations make things truly better or not

Also the JDRF has funded other studies, such as JDRF Funded Research Shows Promise For Prevention, Reversal Of Type 1 Diabetes. While Faustman’s work does look to hold promise (personally, if I lived in that area, I might have volunteered for the study), this one uses medications that are already human use approved.

I am sure that there are people at JDRF who see it as a paycheck and there are people there who see it as a cause. That is going to be true in any large organization.

T1 diabetics are much MORE likely to see some type of cure than T2’s, IMHO. Why? Because the T2 market is so much larger than the T1 market. That is following the money.

I can see where the frustration comes from on this, but where does the JDRF draw the line on which study to fund and which one not to? I’m sure they have guidelines in place for this and with new or replicated results, there is nothing to say Faustman can’t apply again or that the study would be denied again. While your right to campaign for people to speak with their pocketbooks is certainly valid, singling out a single study does not help your case with me. It makes me ask “what is the authors relationship with Faustman?”. Now if you could show a pattern over the years of this type of behavior, then you would stand a better chance, at least with me.

This is not to say that I totally support the JDRF (let alone the ADA) in everything, my issue is that both organizations seem to have become much more political bodies than research. The problem is not money, but the question “What do I get after I get the money”?

Listen, in the big scheme of things, my opinions, while humble and correct, are really meaningless and YMMV

Scott

Considering many of those at the top of JDRF either have diabetes or have a family member with diabetes, yes, I’d say primarily the people of JDRF are altruistic. That does not mean I agree with all their decisions. I personally think JDRF should still fund Denise Faustman, but that’s not my decision. But that does NOT mean that I think JDRF deserves to not be funded by us because they contribute to dozens of other important research studies.

I know people who ONLY believe Dr. Faustman’s work will cure diabetes and have stopped supporting JDRF altogether. Perhaps that is not you, but if it is (and from your message that’s what it sounded like) then I think that’s poor decision making. It’s my opinion.

hmmmm…

I think that part of the problem with the JRDF and Dr Faustman was the JRDF response to her first published paper on her findings with NOD mice. They freaked out, and claimed that she was rigging the results and accused her of using bad science. For some reason they went out of their way to even take out a full page ad in the NewYork Times? They put pressure on any funding source to get all of her funding pulled. Then, as luck would have it other labs did what the JRDF folks could not to and succeeded at the experiment. I think that at the bare minimum the JRDF folks forgot that in peer review they are not the only peers… I am left wondering if they bothered to check that they actually did the experiment correctly. Now, there are plenty of folks who see this as proof that the JRDF is in the back pocket of BigPharma, or even worse they have gotten really used to being a big meaningful org and don’t want to see that change. Heck, even I will have moments where I see them exactly in those ways. But, I don’t think its either. I think the reason for all the freaking out was how her research had gotten results. The JRDF like a lot of us has been approaching the cure from a tissue replacement therapy perspective since the late 80’s. Thats a long time to really believe in something to suddenly find out it is not exactly as true as you would like it to be. Yea, one of the things Dr Faustman was pointing out was that even if you could get stem cells to work, or islet implants. Your own immune system would still be targeting them and before long you would be right back to square one. Thats not really a cure its a bandaid, and keeps needing to be replaced. So, Dr Faustman comes along and does this thing that had yet to be done, she made NOD mice into NO mice. For folks really invested in a pure tissue replacement approach it must have been like she was sledgehammering holes in the foundation of their belief system. She became a heretic to the religion of tissue replacement, and had to be stopped. Funny thing is that since her success all of a sudden there are lots of researchers working on fixing the the problem causing our problems instead of working on bandaids.

Check here…

http://www.reuters.com/article/marketsNews/idINN1752617220081117?rpc=44

Finally, if she was doing the science as poorly as the JRDF’s full page ad in the Times suggested, do you really think that Harvard Med would still have her around?!?!?

Ivan!

Good point,Ivan. If you combine the sledgehammering with the fact the JDRF has been heavily backing the artificial pancreas for several years…

Diabetes Tech Society Update: Acceleration? Maybe… discusses some of the issues with the artificial pancreas still to be resolved, and there are some major hurdles, years worth it seems like.

If you look at some of the recent announcements about diabetes, it could very well end up than an artificial pancreas is a moot point in treating diabetes.

How did they replicate her findings? I’m just curious how they would go about conducting a duplicate study given the time and costs involved.

Ever heard of Hanlon’s razor? “Never attribute to malice that which can be adequately explained by stupidity.”

I try to keep this adage in mind when I read about things that upset me. What is the purpose or point of demonizing people or organizations because you disagree with them or because they don’t do what you want?

If you don’t want to support the JDRF because of this decision it is enough to say so and give your reasons. Nothing is achieved by accusing them of evil intentions or motives or in publishing conspiracy theories which can never be proven.

After all, one could make a similar claim about virtually any cause driven organization - it is a front that is actually PROMOTING the cause they claim to be fighting. The NAACP promotes racism so that it doesn’t go out of business. The ACLU actually supports torture and the denial of civil liberties, otherwise it would have no purpose. The KKK is in favor of integration because it would be irrelevant in a segregated world. Dentist secretly promote practices that give us cavities . . .

Gimme a break. Don’t give to the JDRF. Find someone who IS supporting Dr. Faustman’s work and give to them. There IS someone supporting her work, I suppose. . . .

I’ll give to the JDRF unless someone proves to me that it is actively promoting practices that increase the risk of spreading diabetes. That it doesn’t do enough, or doesn’t do the right thing to cure diabetes is irrelevant. Who is doing more?

Thank you, but that is exactly what I’m doing.

Bravo, a person with an (independently) functioning mind.

JDRF was able to replicate some of Dr. Faustman’s findings (see research undertaken by Anita Chong at University of Chicago on JDRF’s funded trials website) and those replication studies were funded by JDRF, but not all theories were able to be successfully replicated.

Also, I agree with Allison Blass; you may not personally agree with the decision, but unless you’re on the scientific review committee or lay review committee (both must approve applications), then you really can’t criticize a decision such as this, because like any charity, decisions are based on applications received and what else is competing for funding. Also, the Artificial Pancreas project has involved relatively little JDRF outlay; rather the organization has played the role of matchmaker helping to find partners willing to develop the components required.

I have archived the letter from Dr. Faustman here.

Perhaps I should have made it clear(er) that my point was not to stop funding the JDRF, but to question why they did not fund Dr. Faustman’s research (with a mere pittance of their annual outlay) when they did (and do) fund far less promising research programs.

As an aside, I would question the altruism of Arnold Donald who is making nearly $700,000 dollars of JDRF money annually. Google “Arnold Donald” when you can.

'nuff said?

I’m with you.

Do you believe the big pharmaceutical industries are interested in curing ANYTHING?

Do you believe Obama is going to change ANYTHING?

Do you believe Wonder Bread helps grow strong bodies in twelve ways?

There, three for the price of one.

Amen to that.

For the record – I did not claim JDRF is out to hurt anybody. That’s slanderous and untrue. In fact I was happy to learn JDRF funded Smart Cells in bringing Smart Insulin closer to FDA trials:
http://www.smartinsulin.com/news/press/2008_press/2008_10_PR_Final.html
My blog on the JDRF was exactly that - a web log freely associating the living paradox the JDRF has become in light of the mission (established long ago) to ‘cure’ diabetes. If it’s not the mission anymore – just say so.