Comments on: Advocacy and Me

By: An Open Letter to the JDRF « Strangely Diabetic

An Open Letter to the JDRF « Strangely Diabetic — Thu, 16 Sep 2010 13:54:44 +0000

[...] 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 [...]

By: Scott Strange

Scott Strange — Mon, 24 May 2010 18:24:19 +0000

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.

By: Paul Dizmang

Paul Dizmang — Mon, 24 May 2010 02:28:04 +0000

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.

By: Bob Pedersen

Bob Pedersen — Thu, 20 May 2010 03:48:00 +0000

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.

By: Scott Strange

Scott Strange — Thu, 20 May 2010 01:14:50 +0000

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

By: thisiscaleb

thisiscaleb — Wed, 19 May 2010 21:20:10 +0000

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.

By: Scott Strange

Scott Strange — Wed, 19 May 2010 20:01:49 +0000

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

By: Michael Hoskins

Michael Hoskins — Wed, 19 May 2010 18:17:28 +0000

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.