Let’s all agree that we are passionate about finding a cure for our disease. But let’s not use that passion against each other. We are only 5% of the larger body of people with diabetes. Support whatever research you want but keep in mind we all have the same goal.
For the record… After a thorough re-reading my blog, nowhere did I say the JDRF gave Dr. Faustman $2 mil as you indicated in your third … (paragraph?). My underwear is loose and comfy and I stand by my words. I did read Dr. Faustman’s gracious letter to her supporters in response to the JDRF’s (still puzzling) decision to refuse further support on her project despite the fact that it falls squarely in line with the JDRF’s unequivocal mission statement. Yes, Dr. Faustman is too gracious to make a big deal out of this and is content to rely on the Iacocca foundation and other donations. Perhaps you should re-read my blog and get your facts untwisted.
I’m with you Khürt. It’s funny… whenever you question the motives of an institution who’s mission is such a lofty one, (and clear cut) like the JDRF, those who support it are loathe to take off their blinders long enough to examine it with a clear, logical, and unbiased mind.
Your subject line reads “Would you donate to JDRF after learning this?” and your post sounds like you’re adamant about people not funding JDRF at all. Now, in other posts you have stated otherwise, but I want you to know that’s the impression you gave - whether or not it was true.
I again will state that not funding JDRF cuts off the arms and legs to the other research projects it funds. That is NOT to say I think their denial of funding to Denise Faustman was a good idea. Honestly, I don’t much of an opinion. I know very smart, well-read people who think she should be funded, I know smart, well-read people who think it will fail. Who knows? I don’t have a problem with people who think she should be funded and are mad JDRF said no. That’s fine. My only problem is when people state that JDRF should then be summarily not funded because of said decision. I also don’t understand how not funding one or two or even a handful of research projects suddenly means JDRF is against the cure. That’s not true. They’re just not in favor of monetarily supporting that avenue. That’s different. If JDRF was like the ADA and suddenly spent the majority of their money on educating people about healthy eating then I would agree JDRF isn’t for the cure. But their research projects are still primarily about curing and preventing diabetes, which is perfectly in line with their current mission statement. Don’t throw the baby out with the bathwater.
Now, it’s your right to do what you will with your money, but actively discouraging people from funding an organization that does do good work in a wide variety of arenas is just mean and I stand by my right to say so.
That’s all.
You sound pretty biased. All I’m trying to do is make people think. I chose my words carefully, and I don’t twist things around, Allison. What you read into them is entirely up to you. But to mis-characterize Allie and myself in this statement: “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” pretty well tells me how your mind works. That’s unforgivable. Allie says that she never claimed that, and I never read that in any of her blogs. Furthermore, I never said that she is the “ONLY” intelligent person in this community. Read what I said, "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. I’m tempted to scold you for being so childish, but I’ll refrain.
Personally, as much as I would love to see JDRF funding any and all studies that show promise to find a cure, I can understand how they may have reasons not to fund Dr. Faustman and I respect those. Up to this point, I have not had the chance to go through any documents that would make me think that JDRF has not funded Dr. Faustman for reasons that could be unethical.
I can see how the title “Would you donate to the JDRF after learning this?” that Mr. Peachy gave to this topic can be seen as actively discouraging people from donating to JDRF. But in the end, we all make our own choices and have the right to express our own opinions based on the information we choose to read and believe.
For instance, I choose to donate to JDRF and also to Dr. Faustman and I raise awareness about their fundraising activities. I also encourage people to donate to DRI too, as I see all three of them as working on potential paths to finding a cure.
Now, from a community standpoint, I want to ask you to please keep the discussion civil and avoid getting personal about it. Some of the most recent posts give a feeling that this very delicate topic is unfortunately turning into a personal exchange, which is far from the spirit in the community. It would be a shame to see such an important topic ending up closed as a result of it getting personal.
I donate to the JDRF and Dr. Faustman as well. Whomever finds a cure first, “we win”.
Naturally, you are right Manny. I should have posted a less volatile topic leader. I have always been a champion of the “little guy” when it comes to corporate shenanigans. When I see what appear to be suspicious activities on the part of large corporate concerns at the expense of the little guy, I tend to get cynical. Particularly when the corporate heads’ best interests are vested in making ridiculous sums of money from an unaware public for as long as they can get away with it. When I see someone blindly come to their defense without considering all of the facts, I tend to question their motives. I appreciate your neutral ground in this exchange, and I’ll be more careful and considerate in subsequent posts. Like you, I just want to raise awareness.
My question is - why question their motives? That way lies discord.
If a person is blindly defending something the defense is more likely to be coming from emotion, in my experience. In that case, question their knowledge first.
And then there is this (from the New York Times Nov. 13, 2008):
A former official of the Juvenile Diabetes Research Foundation led a false invoicing scheme that resulted in the theft of more than $1 million from the organization, Robert M. Morgenthau, the Manhattan district attorney, said on Thursday.
The ex-official, Jonathan Stenger, 35, who was director of communications and publications, enlisted the help of four friends to bill the foundation for paper and other supplies he never actually ordered, Mr. Morgenthau said.
Mr. Stenger and his friends were indicted in State Supreme Court in Manhattan on Thursday on several counts, including grand larceny, money laundering, forgery and filing false business records. The other men charged were Harold Chayefsky, 54, a print broker for Wintry Press and Mill River Press; Robert Krueger, 40, an assistant professor at Worcester Polytechnic Institute; James Wawrzewski, 51, the president of Cobalt Design Group; and Justin Sias, 35.
Thank you for pointing this out, Melissa. Perhaps you should be aiming this message at those who twist my words (and the facts)… and then condemn me for demonizing an institution they support (which I wasn’t actually doing) based on their distorted interpretation of my message which was solely intended to suggest that maybe this institution is not doing what it says it’s supposed to be doing in their mission statement. I think that would be even more constructive. Don’t you? Here’s a perfect case in point… I never said “each person contributing to this discussion does not have an independently functioning mind”… you did. All I did was to compliment Scott for having one. In other words, we all tend to see things from our own perspective. I think true constructive criticism can only come when we can shed all of our preconceived notions.
I’m not buying that for a second. My experience tells me that the truth is uncovered when we do question someone’s motives. Whenever money is involved, the motive becomes quite clear. When emotions are involved, it’s usually a personal issue… pride, ego, brainwashing, you name it.
Here is Dr. Faustman in her own words about her research if anyone is interested, it’s a long video so garb coffee unless it makes you spike then grab something else 
http://vimeo.com/1435650?pg=embed&sec=1435650
I have been reading everything in this topic and what I am thinking is this. There have been no cures for anything from a single person. Research that leads to cures always comes from building upon the first thru the millionth error. Dr. Faustman has a good point in the video that no one else was using naturally occurring Diabetes in mice that is valid. However what is also valid is if research waited for NOD in mice we would be much further back in research.
Part of Dr. Faustman’s research has to be biased on previous research by different people and organizations she was not born with an absolute knowledge of diabetes and T cell relation. I hope she is right not just for us Type 1’s but it opens the door for all autoimmune diseases. The JDRF has contributed because of there past research even if there contribution was to show error it is considered an asset to all future research endeavor’s. Supporting both would be a great idea. Asking JDRF why would be good but we or I or you may not agree with there reasons why.
Be loved
I think it’s up to each of us to support any organizations whose stated goals and demonstrated behavior is something we agree in.
I used to be a strong supporter of the ADA. They have several goals including support for a cure. I don’t do this any longer because I want to focus all of my efforts on a cure.
I’ve never supported the JDRF. Not because I think they’re a bad organization, but I was too focused for a while on supporting ADA.
Now all my efforts for the last three years have been focused on supporting Dr. Faustman. Her approach seems to hold a lot of promise. Despite this, and her strong belief in a successful outcome, it may fail. Clearly a lot of us believe in her approach, because most of the money she’s received has come from bake sales, bike rides, golf tournaments and thousands of $5, $10, $20 and other not so small donations.
Type 1 diabetes is a complex and challenging disease. I recently attended a DRI session on the work they are doing on pancreatic cell transplants as a way of improving people’s lives while they are working on a cure. I learned several things during that one-day session, including how fragile pancreatic cells are and how much nutrition they require in order to do their job.
My belief (and it is just mine) is that Dr. Faustman’s work will either result in a ‘cure’ or in some significant steps towards a cure. Her form of a cure may involve daily or weekly (etc.) injections of a different substance to maintain the function of pancreatic cells. That’s fine with me. I’d inject several times a day (I do already) if I could live life without having to worry about blood sugar control.
Maybe the most important thing we could all do is to raise awareness of the challenges of a life lived with diabetes. Tell our friends and family. Contact our state and federal legislators and meet with them. Spread the word about the importance of supporting research towards a cure. Because acting alone we can’t support all the research needed for a cure.
But working together we can make sure that funding is provided by our government and by private donations.
Apparently JDRF does not believe in “pay for performance”.
The JDRF (formerly JDF) has been a miserable failure over its existence and that is why I do not fund them. What major piece of useful research have they funded? Are we any closer to a cure than we were 30 years ago due to the millions and millions of $$ the JDRF has allocated?
JDRF also does not fund Living Cell Technologies research and that is inexplicable.
1 Like
I’ve slowly been coming to the same conclusion over the past 10 years, but have resisted it because I don’t want to believe that they have put anything in front of the goal of a total cure. I suppose I need to put my irrational barriers aside, recognize the reality of the situation, and direct my money elsewhere. I typically donate to JDRF at the end of each calendar year. This year my entire donation is going to Faustman instead.
$1.3 Billion to be precise.
My questions, exactly.
I truly appreciate your decision to give your entire donation to Dr Faustman. Thank you !
Jaclyn’s Mom
Hi Bernard,
Wow, sorry I missed this post. Major kudos, Bernard. I was particularly impressed with this, “learned several things during that one-day session, including how fragile pancreatic cells are and how much nutrition they require in order to do their job.”
I’m a type two. Since adopting a very healthy, raw foods based diet, taking a few supplements, and exercising all the excess fat off, my type two has reversed significantly enough, that I was able to stop taking all medication in 2007. I now depend solely on raw, natural foods and plenty of daily exercise to control my condition. I have been trying to convince other T2s of the “miracle” of living life, the way it was intended to be, for a long time. Reducing my insulin requirements while furnishing my body with loads of essential nutrients seems to have done the trick. In fact, either my insulin production is up, or my resistance is down. Not sure. Either way, my body is able to take in more carbs (natural, of course) with milder glucose fluctuations today than it was just 15 months ago.
It’s nice to know that there are a few others out there with an open mind and are willing to try new things. I believe they call us “pioneers”.
Your ‘raise awareness’ (second to last) paragraph is a dandy. If I hadn’t met Allie Beatty, I would never have questioned the JDRFs motives. Since becoming more involved with T1s, I can see where both types should join together and combine resources in order to form a louder “collective voice”.
Most sincerely,
Craig
i agree with your premise, but i think that you are a little harsh. i agree that the jdrf is not interested in ending the source of their funding, and i would never have given money to such a hugely bureaucratic institution. i think that it was a little harsh (and alienating) to label all doctors as egotistical and uncaring. i would say that my present doctor is one of the nicest people that i know, and she probably saved my life. i was at the point of really not caring anymore and she woke me up, got me going on pump therapy and brought me to place of believing that someone actually cared (i know that it is her job and she is getting paid and all of that, but it worked). now i will agree that doctors have to compromise on common sense to just graduate, and that probably causes them to look down on people who have not been so programed, but is that arrogance? do you really want to throw out all doctors in support of this? i think that the target is the system, not the individuals…
so yes i agree, no i would not donate, with or with out this info, and i only have a slight modification to what you say… i think that there are probably dozens of “cures” out there, but is T1 all the same? and will it work universally? (yes, i am a homeopath and i do have an attitude against the AMA, but no one else is keeping me alive at this point!)