** or The One Where I Defend the JDRF – #whodathunkit
I’ve been known to criticize the JRDF on occasion … well a couple times … ok quite a few, but after reading a press release from the Juvenile Diabetes Cure Alliance (JDCA): JDCA Report: New JDRF Logo Has Negative Implications For A Cure, I was actually more than a little offended and also quite dismayed that
- They are so late to pick up on this,
- The don’t seem to have actually talked to anyone from the JDRF,
- They seem to have done almost no research on this such as the January 31, 2011 DiaTribe interview with Jeffrey Brewer. I mean you should know who the folks at DiaTribe are since they were covering research way before you kids hit the block, and
- They should know by now that the term “Juvenile Diabetes” is just a tad outdated.
The JDCA’s mission is to direct donor contributions to the charitable organizations that are most effective at allocating funds to research opportunities that maximize chances of curing type 1 diabetes by 2025.
If you read the PDF that accompanies the JDCA analysis, you will note that the document is subtitled “Voice of the Donor for the Cure”. While I realize that donations are important, no where in that detailed analysis can I find anything that places the patient as being anywhere near as important as a donor. For example:
A higher quality of life is a worthy objective. However, the JDCA believes that most donors contribute for the reason of a cure. We also reiterate that the treatments/complications marketplace is already well served by commercial enterprises and an increased emphasis on managing type 1 comes at the expense of cure development. Curing the disease still remains a part of JDRF’s mission, but it is listed second, behind improving lives.
Another element in the rebranding involves a name change from Juvenile Diabetes Research Foundation to simply JDRF. The word “juvenile” is eliminated in recognition that a large percentage of the people living with the disease are adults. The JDCA does not believe that JDRF’s greater commitment to help adults that are living with type 1 better manage their health reflects most donors’ desire to develop a cure.
Kelly: How is JDRF prioritizing the cure going forward?
Jeffrey: As I said, we’re moving towards a 50-50 split of activities and funding between cure and glucose control/complications.
Seriously guys, this was 10 months ago and if you had spoken to some folks at the JDRF as I have, you would have known that this has been in progress for a long time, changing the mission like that was not a choice taken lightly and they have taken both heat and gotten support for it. As a matter of fact, internally, they are still experiencing resistance from some local chapters.
Now here is where I’m am going to get into the shortsightedness of your analysis. I’ve been a Type 1 diabetic for over 40 years, and the cure has always been “just around the corner”. Do you know why I spent the majority of those years totally disconnected from the JDRF? Because after hearing the same thing over and over, I stopped listening, I stopped believing just as my friend Allison did, and I know that she is not alone.
You appear to have applied simplistic mentality to a subject that is so deeply personal in so many different ways to different people. In effect, you left the patients and caregivers totally out of the equation. Foolish. Foolish because these children grow up and their caregivers will still love them as adults. And guess what, those diagnosed as adults have people who love them too. I certainly hope your “analysis” doesn’t do more harm than good.
Here is the brunt of it.
If we don’t work to help diabetics live longer, better, complication free lives how many will actually SURVIVE long enough to see this cure we are all so eager for?
Are you honestly naive enough to believe that the cure is anywhere in sight? I notice you did not give an estimate of the chances for a cure by your desired date of 2025 or mention that the “cure” may mean different things to different people and may not match your stated definition of a cure (which took me a bit of digging to find from your blog, btw…)
Let me put this into a “donor” frame of reference so maybe you’ll not be so confused: 85% of the approximately 3,000,000 diabetics are adults. So instead of ignoring 2.55 MILLION potential donors, advocates, mentors, and volunteers why not embrace them and help them as they grow from being children to teens to young adults to parents to grand parents to whatever dreams they might have?
Just this week, the world had yet another Blue Candle lit, hopefully you guys recognize what that signifies, due to the fact that a young life was silenced by diabetes. A young life that could have been saved by one of those “treatments” you seem to place so little value in.
I am not a parent of a diabetic child and I have the utmost respect for them and how they are able to do all they do. But, if I had lost a loved one and some organization had been promising a cure for as long as I could remember? I’m sure as hell not going to give my “donations” to them. Even more so if they had been tunnel-visioned on “some cure” when they could have advanced treatments to keep my loved one alive.
I’m Part Of The 85.
© 2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com