FUDiabetes

Why we're not getting cured any time soon and i'm not a fan of JDRF

The JDRF pulled in $227M in 2018. Of that $29M went to finding a cure, your not doing diddly squat with that. They spend $16M in management alone, that’s more than half the amount that goes to finding a cure. Back of napkin math says there’s about 1.25M type 1 diabetics in the US, each one has say 20K in avg medical costs associated and maybe 5k in lost wages from having type 1 diabetes, that’s just a guess and likely conservative. 1.25M * 25K a head or $31B, that’s likely way low, that doesn’t factor in the pain and suffering and burden to other family member, or the huge associated expenses toward end of life from complications. This is like throwing a buck at problem costing you $1000 a year. Anyway i’m not a fan of the JDRF, i think they’re a parasite org who’s goal is to keep on paying their payroll, having galas, printing posters, and having people walk endlessly to no where in a desert. If $31B was spent on finding a cure i bet we would have a cure.

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Don’t forget the $850,000 they spent on their CEO. Doing good works takes good people, but one would think you could find a quality CEO for less than $850k a year for such a noble cause.

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However if the the JDRF is a parasite the American Diabetes Association is like a brain-eating amoeba, they flat out are not even looking for a cure.

They pulled in $158M in revenue, they spend anywhere between $60-52M of that on salaries and benefits, while only spending $13M on grants likely none of which are directed at a cure seeing as they get paid off by drug companies $22M a year.


Tracey D. Brown their CEO gets paid $950K a year for working 37 hours a week. I guess she delivered on the revenue increase she promised, however she dropped grants from $32M last year to $13M, yep your delivering on our mission.

If you dig in the numbers just a little bit its really disgusting. These guys spend $9.3M in occupancy, $2.7M in travel, $5.1M in employee benefits, even $1.3M in pension plan expense, yet only are giving out grants of $13M. This place is like the ultimate false prophet marketing advertising machine, truly disgusting.


Their 2018 Form 990

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And all of this is why I try to give local to small effective organizations that spend far more on their missions and in many cases don’t pay their executives.

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Why do they only spend $177,000 on lobbying? You can hardly get one appointment with a congressman for that.

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I used to look for a cure. I’m not looking for it anymore. I’m happy kicking ass everyday as it is.

We used to donate years ago, but we stopped.

The thing is, I do it for free. Same as everyone here on FUD.

I find it liberating to just do it all myself without relying on JDRF. I no longer give them anything, so I no longer care what they do with their money.

When they find a cure, tell me the day after, not 5 years before. :+1:

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Imagine if they spent their entire budget for one year buying off congressmen and women and dedicating themselves to making insulin affordable. Insulin would probably cost the same as the rest of the world, the Congress-critters would be happy, and except for the scientists that missed out on one year of grants the whole diabetic community would be able to rejoice.

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Fair to criticize some of their spending, including that huge CEO salary, but perhaps saying that only $29 million goes to cure research and discounting all the rest of the $108M in research is not so fair.

Looking at the graphic you provide, there is apparently another $30M that goes to “research across our portfolio” which includes cure research (maybe basic research?). Also, I wouldn’t discount the $28M they spend on treatment research. It seems like improvements in treatment (CGMs particularly) have yielded the most benefit to Type 1s so far.

As to the money spent on prevention research, I’d be interested to know how other people feel. On the one hand, preventing diabetes is unquestionably a major societal good. On the other hand, I do selfishly somewhat dread a major advance in that area as it could leave us current Type 1s as a shrinking group of “disease orphans.” But, really, not wanting a way of preventing Type 1 diabetes is like wishing this on people which is pretty indefensible.

Overall, I think you’re right to want to hold them to account and to demand that they keep their focus on the big prize which is a cure.

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I think your analysis is fair, and while JDRF isn’t perfect, they are doing good things, but their focus could be improved as well as reducing their fundraising expenses. They certainly aren’t the worst like some other health related groups that hide their true expenses in affiliates and look much better than they actually are. I still prefer organizations that spend less on their administration when entrusting them with my dollars.

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When I was 5, my parents also were not as “on-board” with finding a prevention as they were with finding a cure, because they felt the same way. They knew a preventative vaccine would mean that no cure would be sought.

And I felt the same way when I was young.

But now, I’d love for there to be a preventative vaccine. I’d gladly live the rest of my life as a T1 if a prevention was found for everyone else.

I think that is an honest and normal progression for a T1’s feelings toward a preventative vaccine.

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Should the money be spent on a cure versus a preventive measure seems like a deep question… However, if you have a cure what’s the value of prevention. Same the other way if you a prevention what is a cure worth. If your getting your money from people looking for a cure is it right to spend the same amount on prevention research? I’m surprise people though are so pacified and content with just having a Dexcom, Apple watch. We make the future. I’m mad as hell we don’t have a cure and we’ve created organizations like the that JDRF and ADA that have morphed into not being bold in their actions and instead turned into places that have million-dollar yearly expense 401k plans and have more spent on salaries than a cure. The JDRF likely gets a majority of their money from parents shocked by the diagnosis of their child who came down with type 1 and wants a cure. There’s no doubt that if you look at how the JDRF spends their money its better than a place like the ADA, the ADA takes care of their bureaucracy, Kinkos, and the UPS. If we have an organization like the JDRF that we’re giving money to, what should be expected of them. If it were me I would find 10 medical researchers with enough ego to work for $0 to review grant applications, a CPA to fill out the 990, a website developed for free by people like who are on this board and who would also work for free for promotion and nothing else. I would even have it where people donating could pick where they want wanted their money donated to, 10% to Lobbying, 90% a cure, not 40% for salaries, 10% for fancy office space, 10% travel, 15% for printing, 15% for mailing, 3% cure, 3% preventive, 3% gear that capitalism already naturally serves. Sometimes i feels like we’ve all lost sight of our real goal. I don’t want to hack my Dexcom G6 sensor to go 14 days or drive 2000 miles to Canada for insulin, i want to throw this junk in the trash and stuff my face with pie and ice cream.

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I also think that a preventive vaccine isn’t opposed to a cure because once they can prevent it, they likely know something very critical that they did not know before that will make a cure much more feasible. I also think that families often have multiple members with T1D; to help one family member even if all can’t be helped would certainly improve their quality of life.

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I find that it is easier to have this attitude with really good health insurance that covers the things I need in order to take care of my diabetes without it interfering in my day-to-day life too much.

I think that attitude would be much harder if I were struggling to stay in range and didn’t feel good because of that. With all the amazing advancements, I feel like my diabetes interferes only sometimes, so it’d be much easier for me to be at peace with a preventive vaccine that might mean that a cure is never developed.

I also agree that it gets easier to have that attitude as I get older. I think it’d be really hard for a parent of a child with T1D to adopt that attitude.

I don’t really expect there to ever be a cure… but it does seem like having diabetes gets a lot easier with time. I do expect that to continue as long as I can maintain good health insurance.

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What was outlined in this post is basically the entire take away of the JDCA. I work in biotech so I have some opinions and insights on what needs to happen with the money, but overall I think the point is that there dependency between advertised and actual spending distribution. But then again… why would they change?

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Question for the general Audience. Would you (as T1D sufferers) give your money if it was guaranteed to be used only cures (and a reasonable overhead cost)? On a monthly subscription bases?

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Yes!

Let’s do it!

We could start with a website and no non-profit corporation at all, and see if we can gather pledges for donations (but not actual donations). Once we reach some amount of pledges that shows we might be successful, we pay for the CPA and lawyer and then reach out to the people who pledged and get their money and give it away to people who are researching a cure.

Maybe we could even find T1 lawyers and CPAs who would volunteer their time so we could give 100% of the money towards a cure.

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I am only a family member of a T1D, but yes I would.

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Thank you for providing that link to the JDCA document. It says what we were rambling on about very effectively.

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what’s horrific is that there are so many TIDs out there who have to ration out or water down their insulin doses bc they cannot afford to pay for it. at least in the USA.

why is there no money/ funding set aside for those who are either dying or on the verge of it? here’s something undeniable. it’s happening. it’s real. its a death sentence.

Remember “Needle Park” ? during the height of the AIDS epidemic, sponcers were giving out free syringes (mostly to junkies) free of cost, no questions asked, so that AIDS would not, hopefully, be spreading further through infected needles.

you’d think that there could be something similar done for those of us Ds who cannot afford to stay alive from one day till the next. :grimacing:

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