This is a continuation from yesterday’s post.
Please, don’t get me wrong because I don’t mean to dismiss that JDRF does a lot of good, especially funding important research. Without the funding they contribute toward research, we possibly wouldn’t have many of the medical gadgets we have now, nor would we have the understanding about how to best manage diabetes. I’m not holding my breath for a cure, but they’re putting a lot of resources into a closed-loop system from which we’ll all benefit in the more foreseeable future. Plus, it’s great for parents who benefit from connecting with each other. Having some vague sense of how diabetes made my own mom’s life more complicated, I think JDRF serves as an important resource for parents.
I think the areas of need are significant though. I dislike that as the public face of T1 diabetes, they don’t seem to represent adults with T1. There are still so many people who think juvenile diabetes only affects children, and T1 magically morphs into T2 once we reach our 18th birthdays. Some of the misconceptions are so inane that no matter how many times I hear them, I think a few of my brain cells die each time I hear them because they’re just that ridiculous. It’s enormously frustrating that JDRF hasn’t made a more concerted effort to educate the general public that this isn’t a disease that only afflicts children. My friend Donna asked the prevailing question that comes up again and again, “Does anyone not realize that kids grow up and we are adults with juvenile diabetes?” Furthermore, I’ve actually lost track of how many T1’s I know who were diagnosed as adults
One of the overriding issues is that although it’s non-profit, it’s still a business, and its business is to raise money. The Bottom Line is the driving force because of that, and the things we think should be priorities just don’t prevail over costs and revenue. My friend Jayme, diagnosed as a teen, said, “My thoughts are they only care about the parents of diabetics because they are the ones more willing to donate in hopes of a cure.” Tina likes JDRF because most of the money goes towards research for a cure (seriously, if there ever is a cure, Tina deserves it before anyone because D has been brutal to her), but she admitted, “I have always been annoyed that they center on children”. However, she understands that “because adults with type 1 do not provoke people to empty their pockets. We just don’t pull on the heartstrings like kids do.” I totally agree with her on that point, and see that focusing on sick kids is as much a marketing strategy as anything, but what’s the cost to the people living with diabetes? The public thinks juvenile diabetes only affects children, and we spend our adult lives explaining otherwise and combating misconceptions.
One of my friends, diagnosed at a very early age, has benefited from a diabetic service dog through Dogs 4 Diabetics (in the interest of full disclosure, an organization I support and to which I’ve donated), and I can totally see where she’s coming from.
“I simply don’t feel supported by them, and I don’t care about a cure. I want some money for insurance, I want some support for mental health with diabetes, and I want money for D4D… JDRF constantly contacts D4D and asks them to donate dogs to be auctioned off and it really really angers me because they refuse to donate any of the proceeds they would get from a dog to D4D, AND they don’t get the fact that low blood sugar dogs are constantly a work in progress, dependent on the training of both the diabetic and the dog, with the support of at least 10 people on the journey towards the necessary alerting accuracy level to graduate… It angers me that there is no community of support to help an organization that is financially struggling, but that provides the most fantastic service I have ever experienced in my diabetic life. They think that all we want is a cure, but what I really want is support…”
I’ve looked into diabetic service dogs because how cool are they, right, Molly? I hope someone will correct me if I’m wrong, but I think each dog costs somewhere between $25,000 and $50,000 to train. It’s just my two cents, but I think it’s unconscionable for that particular JDRF chapter to ask for a donated dog from a small, struggling non-profit organization that trains the dogs to give to diabetics for free without even sharing any of the proceeds.
These days, my relationship with JDRF isn’t what it used to be. I didn’t do the Walk this last year, primarily because that was the weekend of the BDI Women of Strength Luncheon, and I was literally getting home on a red-eye from San Diego right about the time the Walk was starting. I do enjoy the Walk, and I find it emotionally moving to see that many people coming out in support of people with T1. On any given day, I don’t know or interact with other T1’s in my real life, but to be amongst thousands of people who get it, many of whom live with it, is a great experience. However, I had been feeling ambivalent about doing it this last year, regardless of the scheduling conflict I had with it, so I can’t say for sure whether or not I would have done it.
I haven’t even given any thought to whether or not I’ll do the next Walk. Having done it three consecutive years, I started to feel guilty asking people for money the last year. I did try to carefully phrase the letter I sent to people I knew, emphasizing money towards research for things like a CGMS because it just doesn’t sit well with me to say, “Hey, can I have money so diabetes can be cured?” when I don’t even believe I’ll ever be cured. As fun as the Walk might be, I really hate raising money, but in the end their priority is the big, fat check, and entertaining people is just a means to pad that check.
Ironically enough, I was contacted Tuesday night about taking a Bag of Hope, JDRF’s trademark gift bag filled with a teddy bear, information and various supplies, to a newly diagnosed teen in my area. The timing is especially odd because I hadn’t had any direct contact with them in over a year, and in the four years since I first got involved with the South Jersey chapter, they’ve never contacted me about participating in any way with the Bag of Hope program. I can only guess there’s a coordinated conspiracy to bring me back into the loop or I was a last resort. I’ll guess it was a last resort, but either way, I agreed to do it. While I have my gripes about the absence of representation and support for adults with T1 from JDRF, I can’t imagine ever having a problem with a fellow T1, especially a newly diagnosed one. I do hope the family finds meeting me and receiving the gift bag helpful.
As an addendum, I would like to say that this is all based on my experience with the South Jersey chapter, and for the friends I quoted, their experiences with their local chapters. The exception is when I contacted JDRF about support in my 20’s. I was living on the other side of the river in Pennsylvania, so that was the Philadelphia chapter. There can be tremendous variation from one chapter to the next based on the area covered and the individual personalities involved.
When I said JDRF tells people there will be a cure in 5-10 years, that isn’t something that JDRF International claims. That’s something that’s been said by staff and volunteers at my local chapter, and a claim I’ve heard at various events in which they were involved.
Also, in reference to what I said yesterday about my sense that some parents didn’t want to hear about my experience, I was open about my long history of non-compliance. Allison commented that she’s had very positive experiences interacting with parents of D kids, but my journey with ‘betes has been much different from hers. I could see parents seeing her as a role-model. I’m just a lucky-to-still-be-here lesson in what not to do, so it’s really no wonder that parents would be reluctant to pick my brain. I think my experience needs to be taken into context.