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An Open Letter to the JDRF

There has been a lot of activity recently in trying to create more awareness about adult type one diabetics, both those diagnosed as children and those diagnosed as adults. I’ve blogged here and here about the JDRF. The Kansas City Chapter has been especially frustrating for me. I sent the following e-mail carpet bomb to every email address for the local chapter asking why are the KC events so hard to find?

In your spring 2010 news letter there was an article Let’s Meet: Calling All Kansas City Adults With Type 1 but nowhere in the article does it say how to find out when or where? I’m a member of a loose affiliation of bloggers, DiabetesAdvocates.org, and have been actively searching for events where I could share my experiences with other diabetics, yet it seems every time I hear about an event it has either already happened or I hear about it from another source. For example, the poker run event on June 12th. I heard about that on June 10 and it was in a newsletter from a radio station nothing from JDRF. I get emails from jdrf.org so what am I missing here? It is very frustrating to someone who wants to be able to participate can’t seem to find out how.

Had a bit of an email conversation with one of their office staff and expressed my frustration with the KC branch and the JDRF in general.  The end result?  They added me to some mailing lists.  So I guess that is a win.  I still feel their adult T1 outreach is pretty hollow.

This point resonated very strongly with me recently when Scott Johnson tried to herd us all together to tell what we, Adult T1’s, would like to see in a T1 conference.  Basically, it is the DOC that is spearheading this effort, along with the Children With Diabetes organization, which organizes and puts on the Friends for Life conference.  In the past, the focus has been children/teens with diabetes, but those children do grow up.  Their needs change and that is starting to get some well deserved attention.  Kudos CWD!

Now we can get to what started me on this little tirade.  The JDRF sent me an email looking for applicants for it’s 2011 Children’s Conference in Washington, DC.  I believe that this is an extremely important event as it is designed to keep research dollars from the federal government flowing into Type 1 projects.

Applicants must be between the ages of 4 and 17.

And that is where I got annoyed, as it still seems that the Adult T1 community doesn’t exist.   How about putting some adult diabetics in front of Congress, JDRF?  So we can explain the toll that living with diabetes puts on us day-in day-out for our entire lives.  So we can tell about decades of dealing with the physical, mental, and financial toll that diabetes places on us and our families.   And illustrate why a cure is so important so no other child has to endure this.

When I was a child, the JDRF was some what interested in me.  As an adult not so much.  They recently put out An Adult T1 Toolkit, which contains a lot of good information, but even that is directed mainly at the newly diagnosed.

It is very frustrating, to me at least, to see the JDRF, an organization devoted to finding the cure, simply ignoring those of us who have been out here the longest

  • http://www.blogger.com/profile/09108867545803896885 Cara

    I know that Mary Tyler Moore has been in front of Congress before, on behalf of JDRF, but you pretty much don’t hear about anyone else. I agree that the adult T1 community should be more represented with JDRF. I’m pretty lucky. My local (if you can call 2 1/2 hrs away, local) chapter has an adult T1 support group. Started by a fellow frustrated adult T1. We meet about once a month, but I can’t go every time because of the distance.

  • http://www.blogger.com/profile/05631349520282171319 Scott Strange

    yep, invisible sufferers of an invisible disease

  • Sarah

    I have to agree. It’s almost as if they are saying “Well, you’ve grown out of our time frame, so we don’t want to find a cure for you anymore, just the young ones.”The JDRF chapter’s differ though. Just like in SC. The one out of the Columbia area seems to be a little more stuck up. The one that branched off to start one up in Charleston seems to be a little nicer. I know if I ever do anything else with JDRF around here it will be out of Charleston.

  • Linzie Wohletz

    AGREED!!!!!

  • http://www.blogger.com/profile/06551066714605052991 MHoskins2179

    It’s really a scattered storm of organization and interest, based on where you may be located. Some are good, others not so much. The kids are cute and easy to market, just as we were. But we ALL need a cure and it would be nice to see the JDRF utilize more of the Adult Type 1s than they do. In one local chapter, I saw NO diabetics running the show. But in another, there was a mix of diabetics and those paid non-D professional charity organizers. When one told me once that she understood what it’s like to live with diabetes and the JDRF is doing exactly what I needed, and that’s why I should give $$, I was done there for good. Then I moved out of state, and stayed unconnected to the JDRF or ADA for years until more recently. So, much effort is needed on the local levels.

  • http://www.blogger.com/profile/03286529314567223617 Scott

    I think we’ve all received the same e-mail solicitation. While its important, and I know that the annual “Children’s Congress” does generate a lot of support among Congressional reps and senators, I cannot help but wonder when “Adults Congress” gets to testify before our lawmakers and tell them what its like when the cute kids they just saw grow up and we can’t get insurance coverage at any price, how challenging it is to appeal for-profit insurance company denials of prescribed items like test strips exceeding a pre-determined number each month, etc. As I said, I think this is very much a work still in progress.

  • http://www.blogger.com/profile/03920320645744084041 Crystal

    The ADA Call to Congress is where “adults” come in… I’ve been. It was an amazing experience.(http://wwwitiswhatitis.blogspot.com/2008_05_01_archive.html)Sadly, this year the ADA did not have the funds for it. I’m told maybe in 2011.Of course, 1) the new ADA site still confuses me, I knew where Everything was on the old one 2) Not much about the Call to Congress, not even past events. :-(Shit.

  • http://www.thediabeticduo.com Renata Porter

    I will be following these stories pretty closely because we are trying to accomplish the same thing here in NZ. And it’s kind of scattered and not knowing where to begin or where to go…so please keep posting on this. I look forward to what the results are!

  • http://www.blogger.com/profile/05631349520282171319 Scott Strange

    Crystal,Hmmm, maybe that is part of the problem. I have never considered the ADA as truly representing my interests as a T1, and it seems most other T1’s, that I’ve talked to, don’t either. I know they were at the Roche Summit and I was honestly surprised that the JDRF wasn’t

  • http://www.diabetesdaily.com/baumgartel Rachel

    I was kind of surprised to see this in my inbox. Do they know enough to know that my husband is a type 1 even though I am type 2? Where exactly did they get my name and everyone else’s? It does seem like a sucker punch, though. Easy to forget that kids grow up, once again.

  • http://www.blogger.com/profile/03920320645744084041 Crystal

    I feel ya. But the advocacy part of the ADA, imo, is good. It represents All and SO many T1s (even kids) were at the Call to Congress. Top people, volunteers!!, were T1 and T2…. amazing people.Not sure now because I’m outta the loop, especially locally. I don’t know, Scott. I don’t.The Call to Congress was great but the legislation they pushed for was based on their agenda, in a way but also based on what was IN legislation at the time. I met my Congressman, sadly retired now, and it was amazing.But for “MY” issues to be heard, it needs to be local and local help right now is non existent. I don’t have the time and resources for it…..

  • Mike Kondratick

    Scott, I work on the advocacy staff w/JDRF. I really can’t quibble with much of what’s in your letter.In fact, we are working on some projects in the advocacy area that I think could address at least some of the concerns that you note. I’d love to get your input on these projects as well as any additional ideas you might have.Pls. shoot me a note at advocacy@jdrf.org and I can pick-up the conversation from there.Thanks for taking the time to express your concerns, Scott.

  • http://www.blogger.com/profile/05631349520282171319 Scott Strange

    Thanks Mike, I’ll drop you a note

  • Reed Garrett

    Hi Scott, I’m a volunteer & on the bod of the kc jdrf chapter. Like you, i have lived with type 1 for over 40 years. Over the past year a handful of adult type 1s met and decided to start the kc jdrf adult type 1 group. It’s getting legs and has grown to about 20 people … we’re far from perfect, but the group is energized and wants to meet more frequently. Would love to have you part of it and i will send you an e-mail to connect with you.

  • http://www.blogger.com/profile/05631349520282171319 Scott Strange

    Thanks Reed, I’ll look forward to it

  • Scott K. Johnson

    Great post Scott – and it looks like you got some potentially good connections from it. That is wonderful!Do you ever think about how powerful things could be if all the energy wasn’t, as Mike Hoskins said, scattered?

  • Julia

    I hope Jdrf reads your blog. I never want my son to feel this way, he is 10 years old, and 10 months into his diagnosis. It has been very hard for him and until I read your blog I thought I was fine dealing with his emotions on my own, buy I know now I need to do more for him. He has went through all the phases of emotion, but the anger does not seem to be getting better.. If you have any advice I would greatly appreciate it. Thanks!

  • http://strangelydiabetic.wordpress.com Scott

    Hi Julia,

    I sometimes wonder if the kids don’t sometimes go thru the 5 stages twice. The first time when they start having to take shots and test, test, test and all the other things. And then a second time when they get to a maturity level where they can actually UNDERSTAND that the diabetes is not going away and it is a lifelong condition. Kids shouldn’t have to understand things like that, but sometime we have to.

    If it was my son, I think I’d try to get him involved with others his own age, not necessarily other diabetics, in some activity that really doesn’t center on the D. Baseball, soccer, whatever he liked before his world changed there really isn’t any reason why he can’t continue with those activities. Remember to let him be a kid…

    Scott

  • Julia

    Thank you Scott!

  • http://strangelydiabetic.wordpress.com Scott

    Feel free to drop me a note anytime there is anything I can do, and yes, I’ve had quite a bit of contact with the JDRF on this post

  • Meg

    I absolutely agree. I think adults w. type 1 can offer a lot to the conversation — plus, I think we help create awareness of the lengthy, long-term challenges of living w. type 1

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  • Chris Opsal

    Something no one has mentioned here, although maybe you have elsewhere, is that it’s especially difficult to communicate the presence of adults with type 1 within JDRF when its name is still JDRF. While I’m sure lots of today’s adults with type 1 were diagnosed as kids, many of us weren’t (me: at age 20), and having the “juvenile” in JDRF’s name just perpetuates that stereotype and makes adults who were diagnosed with type 1 as adults feel even more like they don’t have an organizational and advocacy “home.” I’m a volunteer with JDRF’s Online Diabetes Support Team, and I do appreciate their massive funding of research (and support it), but I have always struggled with JDRF’s kid focus, even more so since I was never a juvenile with so-called juvenile diabetes.

  • http://strangelydiabetic.com Scott

    You’re right Chris, it’s mentioned in one of the follow up posts to this letter. Lot’s of adult T1’s feel that way even the ones who were diagnosed as children.

  • Kelli

    I’m pretty new to the T1 scene as I was only diagnosed a few months ago. This is the first time I’ve heard of the JDRF. It’s kind of alarming to see so much emphasis on T1 in children and yet little to nothing for diagnosed adults, or even for those who have grown up with it. It was difficult to find information in the beginning as a lot of T1 info is geared towards children and teenagers and it seems like there should be just as much or more for adults. I really wish there was more open support and acknowledgment of this disease through adulthood. I’ll be checking JDRF now that I know it exists, but yeah.. it’s a little disappointing.

  • http://khurtwilliams.com/ Khürt

    I was diagnosed with T1 diabetes in 2006 just before I turned 40. When I first encountered the JDRF – through a DOC member spreading the word about a walk – I thought to myself, “But, I’m not a kid”. I did the walk anyway and my family and I have done it annually since 2007.

    The focus on the kids doesn’t upset me – it downright pisses me off. There are far more T1s over the age of 18 than under. So why the freaking focus on kids? Because teary eyed kids move people and sell agenda. “Do it for the kids!” is the dumbest reason to do anything.

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  • Samantha

    I couldn’t agree with you more. After 31 years of T1 diabetes (I was diagnosed at age 4) I feel like now more than ever there is a severe shortage of support and aknowledgment for us as adults. I also switched to an insulin pump in January of this year which has been CRAZY and so hard to deal with! The stress of dealing with T1 diabetes and children and full time work is more than most people want to admit.

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