Friday, May 21, 2010

The Hunt Is On

The Hunt for Adult Type 1s has begun in Central Indiana.

At a recent JDRF Indiana Outreach Committee meeting Monday on the northside of Indianapolis, those people attending focused on the topic of finding more adult Type 1 diabetics who might be interested in getting involved in this area's chapter of the now 40-year-old national organization. Most of the active members and volunteers are Parents of Children With Diabetes, who are the very ones in fact who founded the foundation back in 1970 to focus on cure research. You have some adult diabetics who've been very involved for years, but they are a minority. We want to increase that presence and what the JDRF means for us overall... At least here in Indiana.

Sure, being a member of the ever-expanding Diabetes Online Community through blogging, Twitter, Facebook, Juvenation, has connected me with many awesome adult Type 1s nationally. But I haven't met many inside Indiana, and that's something I'd like to see change. The JDRF efforts seem to be a great place to start.

In my opinion, determining how to do this coincides largely with knowing the reasons why Type 1s may not be that involved in JDRF in the first place. A part of this may very well be that the JDRF does great with newly-diagnosed children, the older kids, teens, and their families, but historically the organization almost seems to stop caring once you turn 18. Many of us Type 1s have felt forgotten, and in those young adult years where you really move forward on finding who you are and making a place in this world, the JDRF falls far down and eventually off the priority list. Personally, this happened with me in college and in my 20s. Particularly in that the JDRF seemed so aligned with those always saying a cure is coming "withing five or 10 years" and that all is about the cure, and nothing else. As you go on in life and become more "jaded" about whether a cure will be found, the cure-focused tunnel vision of the JDRF loses out even if you still maintain individual hope that one could someday be found. Not to mention the fact that kids are more the marketable and telling Faces of Diabetes that win over politicians and make people want to contribute money to.

Fellow D-Blogger Scott Strange, a veteran Type 1 for 40 years who runs Strangely Diabetic, posted about this recently and echoed many of the thoughts I've had on the subject of the JDRF: "Honestly.. 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 no one else has to go through this."

As a kid and teen, I was involved in the JDRF up in Southeast Michigan and participated in walks and rides each year, raising money and doing some general advocacy work for the local JDRF. There's been D-camps and volunteering at the local chapter office doing office-tasks. But in the end, my regular life took over and it was clear that the JDRF wasn't as much for me, as it had been in those earlier pre-18 years.

In the past year or two, the realization hit me that the JDRF does, in fact, affect my world and it has historically done that in these 26 years of Living with the D. It's been largely connected with my involvement with the Diabetes Online Community, seeing other younger and older adult Type 1s who have remained involved and have discussed their own perspectives on all of this. I began to see more that finding a cure is the priority, but the JDRF has in funding that research and leading the way changed the way the world thinks about Type 1 diabetes, how society reacts to it, how schools manage those issues, and how technology is developed for better management short of that end-all cure. Insulin pumps, CGMs are just two of those examples that have changed the way we live with this chronic condition, and I've benefited greatly from it. That is worth giving back to the JDRF in time and advocacy, just as it intimately fits in with a larger goal of being more of a Diabetes Advocate in general and doing whatever I can from my own little corner booth.

So, the new goal is to reach out through Facebook, Twitter, the D-O-C, and in person to engage more adult Type 1s who may have also been "left out" but may want more. The JDRF created an Adult Type 1 Toolkit to help re-engage this segment and it contains some great info. I'll be talking with my Endo in the coming weeks about reaching out to those Adult Type 1s she knows, hoping we can connect - other volunteers are doing the same for this region. A goal in all of this may be what's tentatively being dubbed the Adult Ambassadors Initiative - basically involves bringing more adult Type 1s into the JDRF fold, getting them to be the faces for this group, be spokespeople and take on sort of mentorship roles. Maybe talk to kids and families who sometimes might look to us as inspiration.

I've identified a few individuals who could fit nicely into this role, though they aren't yet approached on this and may not want to get involved in this way so they'll remain nameless at this point. But one high-profile person has already been ID'd and could be a key advocate: NFL defensive end John Chick, a 27-year-old Type 1 who was diagnosed at age 14 and most recently signed on with the Indianapolis Colts. He's been an ambassador for the JDRF in the Canadian province of Saskatchewan, where he played for the Roughriders in the Canadian Football League, and word is he is already getting involved here in the Hoosier State. So, that's an incredible high-profile name and face to have on board. A D-Meetup could be in store before long...

Getting to these other fellow Adult Type 1s may involve answering for them a key question: What does the JDRF mean for you now, and what can it offer your life?

To again echo Scott Strange: "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. We (Adult Type 1s) 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."


So, while it's not Red October, it is a worthy mission and one worth pursuing. It's all a work in progress, but every initiative has a beginning and this is it. My hunt begins.

10 comments:

connie said...

I wish you lots of luck with this, Michael. I am the mother of two very young girls, both of them have type 1 diabetes. We are very involved with our local JDRF chapter and I hope that as they grow, their relationship with JDRF will grow with them. I don't ever want them to feel alone in this.

We have a JDRF adult type 1 diabetes support group in our area, just last month they had a get together of about 14 people. From what I understand it was a great success and a lot of fun.

I hope that this new outreach program in your area is a success, my girls will eventually grow up and become adults someday and I want them to have a safe place to turn to where they can meet with other adult T1s who understand and get what they are going through.

Wendy said...

I'm thrilled to hear your enthusiasm. As a PofCWD, I can't tell you how often I turn to adult T1 blogs for insight...I don't know what a blood sugar of 400 feels like. I don't know what the roller coaster of emotions is like.

I educate, educate, educate myself.

But there's SO MUCH I'll never know.

I hope JDRF will be successful in this quest...like Connie, one day, I know I'll have to let my little girl go. I would NEVER want her to feel alone on this journey.

Jim said...

Thanks Mike,

You got me to at least finally go back over to FaceBook and click the Like button on my local chapter. Not sure where this will lead. If anyone hasn't guess yet, I still like my anonymity a little bit.

Cara said...

It sounds like a wonderful thing. Honestly, until about a year ago, I had very little to do with JDRF. I still don't have a lot. But my "local" chapter(I use that term loosely as it is 2 hrs away) has started an adult T1 support group. It's hard for me to get to the meet-ups, but when I do, it's nice. I feel like one of the forgotten ones. That's what made me reach out in the D-OC. Having a more localized support system is a positive thing.

Scott Strange said...

Great in-depth look what is going on in Indy. I hope other chapters can take a look at what is going on there and learn from it. It's interesting to see what is going on internally as these out-reach programs get ramped up

Thanks Mike!

Scott said...

Good luck with your endeavor. This is an area that I think many of us will be following, in part, because I think it needs to be replicated elsewhere, and this a path that's largely virgin territory. Please keep notes, so others can pursue the same thing!

Araby62 (a.k.a. Kathy) said...

Good luck Michael! I'm with Cara...I see JDRF mostly as the funding/legal instrument for type 1 and not something that touches my daily life the way the DOC does. But at the same time it is so nice to meet other adult t1s.

Oh, and given your theme I can't resist a movie quote...

"Crazy Ivan!"

thisiscaleb said...

Kudos, Michael for taking the initiative to do this. I wish you the best.

Erin said...

I just moved to Indiana a little less than a year ago. I've been contemplating getting involved with JDRF (as an adult). I did the Promise Campaign as a kid, but as you discuss "fell away".

DM me on Twitter @erinkoglin with info if you are looking for people. Seems like it might be a good time to get involved.

Don said...

Thanks for your post, Mike.
You're right on the ball. Online communities are very helpful at disseminating information to the public. More people should be doing this.

How do you feel about diabetes clinical trials?