Disconnect Between Fundraising Messaging and Use of Donor Contributions
The JDCA was established because our founder believed that many, if not most, people who donate to type 1 diabetes charities do so for the purpose of a cure. However, when he took a closer look at the diabetes non-profits’ operations and funding allocations, he found that cure research was actually receiving a minority of funding allocations.
It is our mission to shed light upon the disconnect between donor intentions and funding allocations. Why do we believe that many people give for the purpose of a cure? For one, many fundraising events use the goal of a cure in their messaging and promotion.
Our latest report, “The Disconnect between the Cure Message Used to Solicit Donations and the Allocation of Those Donations,” explores precisely this issue. It lists major fundraiser events for the JDRF, ADA, DRIF, and Joslin, and not surprisingly, a large majority of these events invoke and inspire the fight for a type 1 diabetes cure. This message seems to suggest that a majority of the funds raised will be used for cure research.
What is more, some fundraising initiatives, such as JDRF’s Walks for a Cure, guide family teams to write letters and make videos to encourage donations to participate on behalf of their diabetic child/children. This appears to send a message – that efforts going into the fundraisers will be used to help fight for a diabetes cure within our lifetime, so that these very children will be able to live a cure-free lifestyle.
However, as we point out in “Review of Expense Categories of the Major Type 1 Non-Profits”, the JDCA estimates that only 20% of aggregate donor contributions to three of the four major type 1 non-profits was directed to type 1 cure research grants in 2011.
It is our mission to inform donors of this disconnect so that they can take the necessary steps to ensure that their contributions reflect the intention of their giving.
We need to take action to make sure that this disconnect is adjusted and more money that is donated for the purpose of a cure actually goes towards projects working to achieve that goal. If you want to ensure that your donation goes solely toward type 1 diabetes Practical Cure research, please attach our Donor Action Letter with your contribution. Together we can make our voices heard to focus research toward a cure.
- Stoyan
You want a cure. You want the research aimed at the cure to happen. You want these organizations to direct their collected money toward that cure research. But what you fail to see it’s not A leads to B (money in the right direction leads to a cure-all). It’s more like A leads to a whole mix of scattered letters and we’re trying to determine the order before we can finish the alphabet.
The road toward the cure is more than just conducting the actual science experiments that might help pinpoint the complexities and incredible uncertainties about Type 1 diabetes. It’s about learning about the disease to know what is needed to cure it, and being able to maintain the largest revenue streams (government funding) that currently go toward a cure. That takes advocacy, messaging, and marketing. Without that money, the research in the labs that is discovering more about diabetes and giving us more insight into HOW we cure diabetes, can’t happen.
It’s not as simple as saying “fund a practical cure” and that’s it. If so, the JDF and ADA and all these organizations could have teamed up long ago to just dump enough money into the cure pot. We do not currently know what exactly we’re looking for as a cure, and that’s the challenge that necessitates all of this other advocacy and fundraising. You know, aside from simply living well so PWDs will actually live long enough to see the cure.
Hi Mike,
Thanks for the reply again, I always appreciate the interest to discuss our mission.
Although arguing semantics is not really productive, I do want to point out the way you phrased something in the first paragraph – “you want these organizations to direct their collected money toward that cure research.”
We think it is always vital to remember that this “collected money” is the very same money donors raise through their hard work and efforts to fight for a diabetes cure. It is not simply us at the JDCA that want this money to be used for cure research – we are a collection of voices – the voice for a cure, and aim to represent all of these donors. This is why we were created, this is the mission we strive to achieve.
You are very right, however, that the road toward a cure is very uncertain, and no, even if we got all of that money to be used in the research labs, it is not a guarantee that we will find one. We do indeed need advocacy, messaging, and marketing. However, the main issue is that not many researchers have a focused, precise definition for what they are looking for, such as our Practical Cure concept. This is what is missing from (most) of the research labs and the other areas the diabetes foundations spend the money on.
Yes, we realize that we still need to learn much more about diabetes, and many researchers find it difficult to set their foot down and focus one one precise definition of a cure and follow a timeline. However, we do believe that things need to change. We have been following the road toward an “Idealized Cure,” meaning this same long, undefined, none-time sensitive, A to Z (and beyond) route for a very long time. Unfortunately, it has not gotten us that much closer to a cure ever since insulin was discovered.
This is a point where some will disagree with us, but we absolutely believe in action and in change. We want the diabetes foundations to be more transparent with their financial practices, we want them to be more accountable with their choices, and we want a well-defined and time-sensitive diabetes cure target. If we do not fight for change, we can not expect a different outcome than the current one.
One point that I believe we can all unite on, however, is our push for more advocacy for diabetics – there is a growing number of people out there suffering from the disease, on a worldwide scale especially, and we need to do all we can to ensure that they get the help and assistance that they need (and hopefully not have to suffer their entire lives with this disease).
- Stoyan
The more advocacy the better! Whether we agree or not on some of the semantics and other aspects, it’s great what the JDCA is doing. So, thank you for that!
Mike- thanks for always sharing your thoughts. A critical eye and asking questions is what we want people to be doing! We cannot encourage change and progress without analyzing and sharing our thoughts.