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.
Terrible, should be criminal reciprocation for this.
1 Like
I wholeheartedly agree. JDRF has made some bonehead promotional partnering moves that have left me flummoxed, but given the expectations of most donors, the redirection of donations is particularly infuriating.
…but I’m glad, I guess, I have the opportunity to vent my frustration on the forum site JDRF has considerately provided in lieu of funds for cure research.
1 Like
I just read the whole report and its very sad. In general the top two organizations the ADA and JDRF are not spending much on cure research.
JDRF especially has been dropping all its research spending and spending more on salaries and non-research.
The most upsetting stat.
90% of JDRF fundraisers feature a message about a cure. Only 7% of the funds collected go to cure related research.
I’m relatively new to this community but my first impression was JDRF was one of it not our top hope. This reports is very discouraging.
Also I’m in the cure research section I’m not sure why nothing is mentioned about http://www.semma-tx.com I thought they were currently researching producing stem cell based beta-cells.
I can’t speak to the larger issue of the disconnect between the JDRF’s money raising marketing and its allocation of funds to various projects. It does seem disingenuous.
I want to add that it was the JDRF who funded a series of studies in the 2007-2009 era that led to my insurance company at the time to provide coverage for continuous glucose monitors (CGM). I could not afford to self-fund for this technology.
Adopting CGM use back in 2009 is one of the landmark events in my 35-year run treating diabetes. It has enabled me to effect much better control of my BGs and provided crucial safety especially overnight. I will always have a soft spot in my heart for JDRF’s action at that time.
This doesn’t resolve the organizational integrity issue for them but it does demonstrate that this issue is complicated.
4 Likes
I’m not saying they are bad. It seems like their history is very positive for the community. I just wonder if they had a direction or leadership change in the last few years that may be pulling their efforts off course?
I’ve never trusted that donations principally go to the purported purpose. To think otherwise is naive.
It’s my understanding that the JDRF was founded by parents of young T1D children and their initial singular focus was on funding for a cure. Over the years, they found many in the T1D community thought that some resources should be devoted to treatments that permitted a better quality of life, too. This cure versus treatment tension fueled many debates within the JDRF community.
Trust is essential to a non-profit, especially over time. If trust is lost, it’s only a matter of time before the organization compromises its goals. I hope the JDRF can amend its ways and restore its reputation.
1 Like
When money is involved, humans find a way to game the system. Remember, “the LOVE of money is the root of all evil”; not the more misquoted line,“money is the root of all evil”.
I agree that money can undermine the ethics of people and organizations. I don’t believe, however, that it happens in all situations. Some people and organizations are able to resist and manage well the unhealthy allure of money. It requires vigilance and in the case of organizations, inspired leadership.
1 Like
I personally think that JDRF did the right thing.
They switched their mission from being cure-cure-cure and now have a much larger inclusion, on research, support, and advocacy for living a long healthy life with diabetes.
As a T1 for almost 40 years, I think it was the right thing to do.
But I also know the change in mission was (and continues to be) incredibly frustrating for those who are all cure-cure-cure. Especially parents of T1’s who want it to be cure-cure-cure and who can’t bear the thought of us living our whole life with this disease.
2 Likes
Even though a common perception of T1D is that it’s a childhood disease, the majority of T1Ds are adults. I was diagnosed at the age of 30 and the adult-diagnosis phenomena is a real thing. T1D incidence spans all ages. I think cure research is important, but I feel JDRF’s additional focus on quality of life treatments is a critical mission, too.
1 Like
I think its OK not not spend all money on only a cure. Spending on quality of life improvements is important too.
What seems like a problem is the percentage of funds spent on research seems low.
2017: 38%
2016: 38%
2015: 37%
If not research of any type what is the other 60+% going to? Salaries? Operating cost?
That is a lot of overhead.
In 2009 they spent 70% on research.
…my original post quoted the very same stat.
The problem is that they still advertise that their main focus IS cure cure cure, and that most people who make donations believe their money is being used to fund research FOR A CURE, when only a small percentage of fundraising revenue actually does. That’s my major problem They need to be more transparent across the board.
It’s only in the past decade that the JDRF has begun to re-oriented itself towards this reality. That even those of us diagnosed as “Juvenile Diabetics” back when it was the official term, we now live not just for a few years after diagnosis but into adulthood and (in my case) AARP membership!
Again, I think it’s a good thing that JDRF has re-oriented itself.
But as you can tell from the OP and others here, they think it’s a problem. The way the OP and a couple others try to bring their JDRF-isn’t-only-about-the-cure-anymore gripes to this forum, I personally feel that is off-topic and counterproductive to a lot of TuDiabetes goals.
But it isn’t unusual and it may just be human nature to hope for the cure. Yes I have relatives who are surprised I haven’t cured myself in the past 40 years. Such a slacker! And yes docs and nurses still promising me “a cure is only 5 years away!” 40 years after my diagnosis.
2 Likes
This is the only diabetes community I’ve been in and thought it was an OK place to discuss this.
Is there another place you think is more approbate to talk about this type of concern?
I think your comments have been appropriate and on-topic. No worries!
1 Like
JDRF used to have their very own discussion forum a lot like this one. (I cannot seem to find it anymore but the last iteration I remember, was “Type1Nation”.) I think discussions about JDRF mission and internal politics would belong there, not here.
The folks who are repeatedly starting JDRF mission threads here on TuDiabetes, I think ought to at least be talked-to by the TuDiabetes moderators. I don’t have anything against JDRF refining and clarifying their mission, I just don’t think the discussion should be here. It should be done inside the JDRF.
Hey. OP here. Yes, the other forum is very like this because I believe they’re both run by JDRF. Here’s the link:
My reason for posting the JDCA report is that I am a 36-year type one diabetic and subsequently bombarded with JDRF’s promotional initiatives. All of the promotion makes it sound like JDRF’s primary mission is STILL to fund research to find a cure for type 1. I know people who donated when I took part in the walks believed their money was being used for research to find a cure.
This report highlights that people who donate money to JDRF fundraising events are largely misled about where their donations go. Since I have raised funds for JDRF and been their rep to my friends and family, I have unwittingly misled people who thought they were helping me, a type 1 diabetic who has had significant hardship with the disease. So it does seem like an appropriate topic for this forum.
3 Likes