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Advocacy and Me

As I become more and more involved with the DOC, I see alot of folks performing some great advocacy work in regards to fundraising.   And as time goes on, I get more and more items of “writing letters for funding” or “contributing for the cure”.  And while those are important things, I feel it’s a little like preaching to the choir. 

For me tho, I honestly have no interest in fundraising.  I couldn’t sell a glass of water to a thirsty man in the desert without throwing in free ice and a ride to the nearest oasis.  

I can contribute my time, but I already spend several hours a week as an admin on TuDiabetes plus trying to keep up with the various D-Blogs I’ve come to like.  And then when I throw in the thought of all the effort I expend on D-things in any given day… I’m sorry, but my d-docket is pretty full.

In general, I rarely contribute to fund-raisers because I can’t contribute to all of them, and feel guilty when I don’t contribute to one cause or another.  I’m at the point where I don’t even want to get the emails any more, which is why I unsubscribed from all the ADA emails a few days ago.  

Every email I was getting from the ADA was “wanting” something.  Here I am, a diabetic in Kansas City, who rarely hears of anything local involving the ADA, or the JDRF for that matter, being asked to give even more than D already drains from my very essence every day.

At least the JDRF has finally acknowledged that adults with T1 need programs as well.  Thier recent Toolkit had a lot of great info.  But it was still directed primarily at the newly diagnosed.  Those of us that have been doing this for decades have different needs.  I feel as if we are still somewhat left out. 

We need to just be able to get together, whether we even talk about diabetes or not.  It is so comforting to know that you are in the presence of people who are not going to judge you, not going to lecture you.  Folks you can honestly make an instant connection with because you have something in common that is so in-grained, so intrinsic to you all.

Sites like TuDiabetes and twitter make this so much easier.  You can find others so much more easily than you could even 5 years ago.  Now this is where I gave the JDRF Toolkit a failing grade.  It mentioned thier own site, Juvenation, but didn’t mention that any other sites even existed, let alone name any.   

The latest newsletter from the KC JDRF Chapter has an article titled Let’s Meet: Calling All Kansas City Adults With Type 1 but nowhere in the article does it tell you how to actually join up.  Or when and where such a meetup might be?  I mean come on, you offer exactly what is needed and have no infrastructure in place to actually do it?  Makes the adult outreach seem pretty hollow to me.

Maybe I’m just jaded, feeling angry about thinking I was alone in all this for so many years.  Honestly, tho, I just feel that I personally have little use for the national organizations.  They seem willing to use me for funding but offer so little in return that can improve my life on a daily basis.  And I dearly hope that a cure can be found so noone else has to go thru this.  Even if it was some type of “vaccine” and wouldn’t cure me, I’d be pleased as punch if it would prevent anyone else from ever having to live with this.

For me, advocacy has to be about directly working with, talking to, listening to, and learning from the people that I can maybe help in some small way.

Today’s snarky comment: Scott, quitcherbitchin, k? thx

  • Scott: Outstanding point. You hit on a very topic that I’m currently very active in. I’ve felt the same way (and still do mostly) as far as the ADA and JDRF, but with my plunge into the DOC I am trying to network with more Adult Type 1s in the Indiapolis area. Our state chapter’s outreach committee is working on that adult-focused efforts, and I am going to be blogging about this very thing on Friday. With your post, I may need to revise some and take a look at the KC issue as far as connecting. Well done. Thanks for doing your part in getting the word out.

  • Thanks Mike… we seem to think alot alike on most things

  • Ah – this answers the question I tweeted.I completely see what you are saying. There is so much to be gained for people here and now through all the ways you mention above.

  • Thanks Lo… this post has been brewing for several weeks. You should have read the first two or three versions…

  • Right now, “advocacy” for me means trying to be a bit of a support to others. I make some small contributions, but nothing systematic. The thought of meeting with a legislator makes me weak in the knees. What I CAN do is express understanding, when that’s appropriate, or at least caring. I’m hoping other opportunities will present themselves in the future.

  • I want a cure. Unfortunately, I’m not a scientist and I would have no idea where to begin. Wait a minute, I do. Although I may not have the ability to invent a cure, I do have the ability to help fund a cure. Large organizations can get tainted, and sometimes it feels they get lost on their true mission. However, a cure will never be found if research is not done, and this comes at a great cost. I wish it was free, but its not. So although I do agree that the organizations do have gaps and voids, I do know that the JDRF is out to find a cure. And they can’t do it without money. It’s not perfect, probably never will be. But one thing is for sure, if we don’t support research financially, a cure won’t come. It takes all of us, even the 8 year old type 1 who went door to door asking people for change because that was one thing she could do to make a difference. (She raised over $500 doing this)I’m not diabetic, and will never truly understand what a type 1 goes thru, but I do know we need to stop this disease.

  • Thanks Paul. I’m glad I had a chance to talk with you about the JDRF. I came away with a different image of the organization than I arrived with that morning.It seems that we are indeed fighting the same battle, just on different fronts. Maybe the disconnect occurs when we (as diabetic) keep seeing requests for more but it is so hard for the JDRF to offer quantifiable results for those efforts. The JDRF’s frontline is fund raising, mine is my daily care. My right flank is the future, when will complications arise? My left flank is trying to help others. Luckily the DOC provides excellent reinforments on all fronts.As we all know, it can take years and billions of dollars for a treatment to work it’s way thru clinical trial to final approval. As a diabetic, I’ve been hearing that the cure is “just around the corner” since before the JDRF was founded (by about 3 months, so slightly before). After a while, you tend to just filter out those things. The who “Boy who Cried Wolf” effect is strongly in play when I read the various announcements.I feel there is a basic disconnet between the frontline of the JDRF and my frontline. I’ve described some of the symptoms, but I don’t have a clue to the cause. Or how to really bridge that gap.I’m going to blog about my experiences there, but things need to simmer in my brain abit.

  • Pingback: An Open Letter to the JDRF « Strangely Diabetic()