Tim, I think knowledgeable people (like the commenters) might be thinking that research for quality of life can be funded by other non-profits or for profits (like the tech companies) and they would prefer that JDRF re-focus. Everybody has perspective and that influences their donations and their satisfaction with the recipient organization.
Research for or towards a cure is the #1 concern for me for various reasons…the biggest reason is I am 61 years old and want either a cure or a true artificial pancreas to be ready when my old age symptoms kick in. I am guessing maybe in the next 15-20 years I will need something other than self management based on the progression of health issues I’ve observed in my elderly parents (one died at 98, one is still walking but has memory loss issues at 98). Back when they were in their 80’s, they already had enough old age issues that probably would have kicked a self-managing Type 1 diabetic into the grave. I would like my diabetes to be either cured or managed by technology before I’m 80.
Have you contacted JDRF to voice your concerns? Derek Rapp can’t talk enough about JDRF and their contributions, etc at the various Ride To Cures I’ve attended. I’d sure love to corner him at one of these events and ask him some of these very questions.
Without writing a whole treatise on the subject, I would make a few comments:
JDCA was founded (and is financed by a mystery donor) after the Juvenile Diabetes Research Foundation changed their name to JDRF. IOW, they dropped the outdated term “Juvenile Diabetes”. They also publicly stated that they were going to focus on three areas. Cure, Prevention and Treatment.
The JDCA wants only cure research for what they term as a “practical cure”. At their initial founding this was extremely ill-defined, but according to JDCA, any JDRF effort that wasn’t focused on a time-bound “practical cure” was mis-spent.
Sadly, the old saw, “in order to make money, you have to spend money” also applies to fundraising for the JDRF. All the marketing for their events requires money. From the T-shirts, to the banners, to the salaries for marketing and planning the events, etc, they all require money to be spent. The money comes mainly from donations, but the events raise well above their cost.
Here’s a link that touches on the JDRF’s research areas JDRF Research
I’m not defending the JDRF as much as I am questioning the motives of JDCA. When I first heard of JDCA and read all of their materials, it became obvious that they had an agenda and almost every publication I have seen since then promotes this agenda, which to me is a negative, “My way or the highway!” approach.
The JDCA supports JDRF but wants more transparency regarding the usage of donation money. In their polls, they have found that people who donate to JDRF generally believed that all or most of their donation money is going towards research for a cure. Obviously this is not accurate, and JDCA encourages the community to hold JDRF accountable for their spending.
JDCA publishes financials for JDRF and parses that data, providing analysis and comparative information from one year to the next regarding expenditures by JDRF. JDCA also provides information regarding JDRF’s current investments. I know JDRF has done much for type 1 diabetics, however, I feel like a nonprofit organization needs to keep its eye on the prize. I would feel better if they’d revisit their original mission statement. When less and less donated money goes to research and more and more to salaries, it makes me wonder why.
Compared to the worst of the worst NAMI ‘national alliance mental illness’ JDRF doesn’t seem that bad.
In 2004, NAMI opposed the placement of “black box” warnings on antidepressants determined to cause suicide in under-18 year olds, and in 2006 opposed black box warnings on ADHD drugs causing heart attack, stroke and sudden death in children in 2006. Despite overwhelming evidence of serious adverse cardiac events and sudden deaths caused by ADHD drugs, in 2006 NAMI took the position that the “black box” warning on ADHD drugs was “premature.”
As a T1D, I donate quite a bit to charities. I go by the Charity Navigator ratings.
See this for JDRF:
I do not donate to any charity with an overall score of less than 90.
JDRF has an April '19 overall score of 82.74.
Their financial performance metrics are not so hot.
I am not suggesting nor recommending that anyone else follow my strict requirements because there are other reasons a person may want to donate to an organization. You may like the overall purpose and want to support it over time, regardless, and that is fine too. Organizations are made up of humans and not one (org or human) is perfect.
This one is just not my personal cup of tea.
NAMI got 4 stars, that tells me that Charity Navigator is a useless tool.
NAMI presenting themselves as PAOs is disingenuous, but highly seductive to the propaganda targets and altruistic volunteers, many of whom have a sincere desire to help a loved one or a family member who might have emotional problems or are already struggling with the toxic effects of their cocktails of psych drugs. PAOs very successfully influence legislators, the press and the American public and have been very successful in getting legislation passed that benefits the sociopathic industries that fund them, under the guise of helping the patients they claim to represent and from whom the reap enormous profits.
One would expect that any organization claiming to be for the rights of drug-taking patients would have as a primary goal the full disclosure of all psychiatric drug risks, the right to refuse treatment, and the right to know that psychiatric diagnoses are not medical conditions that can be confirmed by any known lab or radiological test. But they don’t.
One would also expect that such altruistic-sounding PAOs would also provide patients with factual information about alternatives to Big Pharma’s unaffordable, poorly-tested, non-curative and sometimes lethal drugs – such as the many effective non-drug treatments that can be curative, affordable, non-addictive, non-harmful, such as talk- and brain-nutrient therapies. But they don’t.
An honest patients’ rights group for the so-called “mentally ill” would never endorse something as absurd and obviously dangerous as giving electroshock “treatments” to pregnant women, nor condone schools requiring children to take a psychiatric drug as a condition of attending school. But they do.
One would think that an honest PAO would never be opposed to the FDA issuing warnings that antidepressants are known to cause some children to become more manic, more depressed, sleep deprived or having new thoughts of committing suicide and homicide. But they do.
NAMI claims to be grassroots but its big pharma AstroTurf.
Thanks, IgotT1. I appreciate your info.
The charities I have supported via Charity Navigator have responded well to me (not overkill on contacts) and have seemed to answer honestly when I call with questions.
I will use your info to try to look further than CN if I have any doubts. Which I have done in the past anyway, but will do more in the future.
I focus on poverty stricken. Last year I gave to Insulin for Life in Florida that supposedly ships insulin to those in need. I wonder if anyone can vouch for them. I know they were quite late with their “thank you” email. I had decided my donation was a loss by the time I got it.
Or not, as I don’t want to hijack the thread here on a different topic.
I won’t add to this in any further posts.
With JDRF, or any charity for that matter, I would strongly encourage looking at several of the rating organizations, and there are many. The JDCF and Charity Navigator have already been mentioned in the post along with debate on their credibility. Other rating organizations reach completely different conclusions. Charity Watch gives JDRF an A- and they receive “accredited” status on Give.org
Some of these sites will argue why they are the best. Many are charities themselves competing for the same pool of potential donors. JDCF has a different motive - “finding a practical cure for diabetes in 10 years”. That’s also not exactly a “hands off” look at the charities they rate.
I guess my point is if you’re going to use outside rating agencies, look at several. Look at their data sources and methods, look at the details in their reports, and look at the rating criteria they use. Then draw your own conclusion based on the collective ‘wisdom’ from each. Then place your “donation” bet. There’s a lot of detail behind the labels they apply.
I have never liked any charity that spends more on salaries and fundraising than the actual causes. But I understand it does take money to get money donated and some bigger organizations pay bigger salaries to attract people to be the CEO’s etc.
I support a lot of animal charities and have used charity navigator in the past to see how much is spent on certain things in certain organizations. But I also judge what the organization is doing and will give based on what I expect that charity will do for that year. I donate if I decide I like the charity and I don’t if I don’t like what they’re doing.
And that is the best way to tell a charity whether you like them or not, is with your donations!