Another disappointing report regarding donations to JDRF

http://thejdca.org/state-of-the-cure-2018/

For the 2017 fiscal year, JDRF spent only 38 percent of its income on research, down from 67 percent in 2008. Of that, only seven percent was used to specifically fund cure research.

@jacquiecdv,

I’m not trying to be argumentative - just want to know. What’s the point of your post?

Thanks.

Bill

Well, I’ve had the disease for 36 years and until recently I was under the impression that JDRF’s reason for being was to find a cure for Type 1 Diabetes, yet for the tenth or so year in a row the donations they collect for their big events, from donors who believe their money is being directed to research for a cure, actually are mostly NOT being used for that purpose. I find that noteworthy. And ridiculous.

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Can you share the breakdown of where their donated money was spent? For example, nn% for Patient Education Efforts, nn% for Administration Overhead, etc.

Thanks!

Bill

This is from the JDCA report (which utilizes the audited public financials from JDRF)
image

http://thejdca.org/jdrf-research-grant-allocation

This is directly from JDRF’s website. I’m actually almost surprised they don’t try a little harder to make this look better.

Thanks for providing the several charts. My reading of the data you have provided leads to a very different perspective - it looks to me like JDRF is spending nearly half of their annual income on research (see the “Functional Expenses” chart on the lower right of your post, above). And please understand that the charts above are an oversimplification of very complicated accounting data; I have never wanted to be an accountant - columns of figures make me very weary. And keeping track of the IRS reporting regulations, including how to categorize expenses, is dizzying.

I am not defending JDRF - it is their job to defend what they do with contributions.

If you are concerned with their “status” as a charitable organization pursuing a “mission,” you might take a peek at the several charity “watchdogs” included in this link: Best and Worst Charities for Your Donations - Consumer Reports . Follow the links in the article (e.g., BBB Wise Giving Alliance, Charity Navigator, and Charity Watch). Look at what those organizations have to say about JDRF International. Develop an informed opinion.

Some 60+ years ago (soon after I had been diagnosed with T1D) I was watching the Today Show with my mother (I had not yet started public school). Dave Garroway was interviewing a man who had developed an amulet or “charm” that he said had healing powers. The man made the claim that, if a person wore the amulet over the area of their body that was affected by an illness, it would cure them of their ailment. He mentioned that it would cure diabetes if worn over the area of the pancreas. I looked up at my mother and asked if she would get me one of the amulets - I told her I was tired of taking shots. My mother began to cry and quickly left the room; it took her quite a while to compose herself and, then, explain to me that the man’s claims were fake. I was confused - he was on the Today Show. And he was talking to Dave Garroway. Surely that made it real. Right?

Many years later, while I was studying for my doctorate, I was working in a biochemistry lab at the Texas Tech University School of Medicine. I was doing volunteer work for a scientist who was working to transplant beta cells in mice. It soon became evident to me that beta cells were just too fragile to survive transplantation (given the level of science at the time).

Some thirty years later I listened intently to a NPR broadcast that reported Canadian researchers had successfully transplanted beta cells in human diabetes patients. My wife was listening with me and asked me what I thought of the report. I explained to her that I thought there was little potential for success of such efforts. I then went through the science of beta cell transplantation and the issues that had to be resolved. She replied, “Oh! Bummer!”

I explained to my wife that, in my opinion, T1D will never be “resolved” until we fully understand the interplay between the human immune system, cell metabolism, and DNA sequences (and “defects”). I noted that T1D would likely never be “resolved” until medical science had been able to resolve both AIDS and Alzheimer’s Disease. I explained that, for humanity as a whole, those two disorders were more pressing concerns than the small number of us who have T1D. The “cure” for T1D, I offered, will likely be a “derivative” of discoveries made in resolution of AIDS and Alzheimer’s.

I explained to my wife that there was a need to continue to work for a “cure” for T1D. But I noted that, in the meantime, there was a continuing need to focus efforts on increasing quality of life for people who have T1D. I noted, too, that there was a continuing need to limit “morbidity” caused by the disorder. By improving quality of life and decreasing morbidity there was the potential that people with T1D could live as long (or longer) than people who do not have the disorder. When I said this my wife looked puzzled. I then asked her, “How many of your high school classmates died before they were 65?” Suddenly she caught on - we are both much older than that.

@jacquiecdv, I guess I’m okay with how JDRF spends their contributions. Some day a “cure” for T1D will be discovered - I’ll never see it, I’m too old. In the meantime it behooves us to be supportive of each other and to focus our attention on living as well as we can. That way we are actually “living,” rather than “treading water,” and waiting for someone to “throw us a life preserver.” JDRF is one of the organizations that can help us live well and decrease morbidity. I appreciate what they do.

This is just my opinion - take it for what it is worth to you.

Bill

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Just to echo the question, “When will there be a cure?” I started to donate money, my allowance, to the JDRF after my diagnosis in 1965. There hasn’t been a real cure yet but they keep saying we’re close. Transplantation, whether islet cells or whole the pancreas has fallen short and creates more problems. I stopped giving to diabetes research once I realized that there is too much money to be made in the treatment of diabetes (drugs, testing supplies, insulin and syringes or pumps, the diabetic educators etc.) The big business of diabetic treatment prohibits a cure.

This October I will mark my 50th anniversary of life with Type 1 diabetes. When I got the condition in 1969, I was 17 years old and was informed that my life expectancy would be about 2/3s of that of a person without T1D, in essence 57 years old. I am now 66 years old, well and healthy. My last A1C was 6.4. The progress made over the past 50 years has been remarkable and while I still dream of a cure that is no longer my goal. I need the best treatments, easier treatments, things that can help me avoid the complications I was promised and for the most part have been able to avoid. My parents were among the first 250 members of the then JDF, now JDRF. The expansion to now being not just the major funder of research but to helping those with the condition live healthier lives is essential for the JDRF to take on since there is no one else who is doing it.
Don’t look at money that does not go directly to research as wasted, much of it serves the community in absolutely critical and useful ways.
I have learned I can live with the thousands of inconveniences and annoyances with this condition as long as I can have a happy, successful and fruitful life without major complications. Of course, I want a cure. But until the time one comes, money going into helping find better treatments and better lives for people with T!D is money very well spent. Efforts spent in getting the government to spend more on research are some of the most fruitful dollars the JDRF spends.
In 1069 I was told that a cure for T1D might be coming in about 5 years. Today, 50 years later, they says it will be a decade or more. But here I am leading a good, healthy life. A cure is the end point, but there are a lot of markers along the way that make a life with this condition not just bearable, but completely worthwhile. We should appreciate those.

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I appreciate your post. Having type 1 for 54 years has been difficult at times and I do appreciate what JDRF does for all of us Type 1s.