JDCA Report: Diabetes Cure Research Down For 2011
The JDCA’s latest report, Review of Expense Categories of the Major Type 1 Non-Profits, has exposed another worrying statistic – the amount of money allocated toward cure research by the major diabetes charities decreased between 2010 and 2011.
Our report offers a detailed breakdown of the expenses for each of the four major diabetes foundations – the JDRF, ADA, DRIF and Joslin. We note that they all have different mission statements and some are focused only on type 1, while others on both type 1 and type 2, but the ultimate conclusion of our findings is 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. The downward trend is noted both in absolute dollars and as a percentage of donor contributions.
This is a major problem for all who are advocating and hoping for a type 1 diabetes cure, and should be an urgent call of action to unite and stand together on this issue. It is worrisome that the foundations continue allocating such a small portion of the money raised specifically through cure fundraisers toward projects aiming for a cure. Not to mention that methods focusing on a Practical Cure (with a precise definition and a timeline) are even fewer. Activities with no potential to result in a type 1 cure account for a large portion of the combined expenses of the four major foundations.
In our next blog on the report we will take a closer look at where exactly all the money not used in the research labs is going to – but it is definitely worth it to read the entire report to understand the complexities of how money is allocated.
- Stoyan
Can you let us know who is the top foundation putting the most toward the mission of a Practical Cure
I found your review of expenses regarding the major non-profits in diabetes to be not only quite revealing, but something that has gone on for years. I.E., JDRF (when it was first instituted) was a really sound initiative, but as most charities progress they become an entity unto themselves with the common mistake of forgetting the mission and turning to fund-raising (organizational sustainability) as the primary goal. As the charity grows, business-types move in and look at the charity from a purely profit-and-loss project rather than advancing the founders’ goal(s).
I also wonder in JDCA’s definition of a practical cure, why there is no emphasis on restoring beta cell activity to ‘normal’ in each patient? Again, defining a cure seems to have lapsed into the patient being a set of numbers. In other words, how many blood sticks do you use? How many calories do you eat? Can you sleep through the night? What was your latest A1c? Cure is also defined as how little surgery and follow-up medications will be ‘less hassle’ than diabetes.
To me and most other diabetics who have lived with this disease, a cure means waking up in the morning without having to worry about anything but what I have to (want to) do this day. No pills. No tests. No worry the disease may come back. No doctor’s visits. And most importantly, complications will be a thing of the past. If you’re going to dream about a cure, make it complete rather than just ‘practical.’
Hi Nicolette and Brent, thanks for taking the time to read our report and blog.
Nicolette- we are not recommending any organization, but rather providing insight and analysis in order to let donors make their own informed decisions. We are still in a research phase and have not precisely determined how much research at each foundation goes toward projects that are working towards a Practical Cure. We suggest attaching out Donor Action Letter (http://www.thejdca.org/wp-content/uploads/2011/12/Donor-Action-Letter.pdf) to your donation in order to ensure that where ever you are placing your donation, it is only used for research aiming for a Practical Cure outcome. (Please email us at info@thejdca.org if you have any additional questions and I can answer any more specific questions)
Brent- you are certainly right that as time goes by and an organization gets larger it sometimes strays from its original mission. What is most disconcerting to the JDCA is that the messaging used to raise money and how it is allocated is not aligned. If an organization changes its mission, whats fine, but then their fundraising tactics should also change.
In regards to our definition of a Practical Cure, we are focused on a patient outcome rather than a scientific definition. We advocate that research work towards something tangible so that they can live a cure-like lifestyle (like you mention, waking up without having to worry about testing or monitoring or checking). Restoring beta cells function is most likely a component to achieving this. But we are not so concerned with how a Practical Cure is achieved- we are scientifically agnostic and not biased to any research methodologies or projects. We just want the cure like lifestyle- we believe that scientists and researchers are the ones with the most knowledge on how to go about doing that. (If I haven’t completely answered your question, please let me know!)
Cara