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A New Direction in Kansas City

On Wednesday evening, May 18th, a group of T1 diabetics and their partners gathered together in Kansas City.  This was the first meeting of this particular group since Jeffery Brewer’s announcement of the JDRF’s new outreach program for the Adult T1 community.   By the way, among this Wednesday evening group was Jess, it was certainly nice to see her again!

This get together was organized by the Kansas City Chapter of the JDRF and was attended by over a dozen individuals including all flavors of Type 1’s,  those diagnosed as children, those as adults and caregivers and partners as well.   It was really a kick-off meeting for what the Adult Type 1 (AT1) group in KC wanted to accomplish in the coming year.

Regan, who is a staffer and is the Director for Outreach and New Business here at the KC Chapter, hosted the event at a local restaurant, Lucky Brewgrille.  The restaurant has been the site of previous JDRF events and the food and beer selection is really quite good.  I had a Shrimp and Bacon Club sandwich, sorry I was remiss in getting a photo, but it was totally bolus-worthy!

Regan introduced herself and explained how this adult type 1 outreach effort is a new direction for the JDRF and really getting it rolling would take a while.  We all then introduced ourselves with a little background and got down to business.

As someone who’s been pretty critical of the JDRF in the past regarding the adult T1 community, I have to say that I was impressed with the meeting.  First of all, I don’t believe there was a single mention of fund-raising.  Second, Regan was very attentive and took a lot of notes as the attendees told their stories, reasons for attending and what they’d like to see in the future.

All the attendees were great, listening and supporting everyone as they told their stories.  We were all focused on one thing: Making things better for diabetics as they navigate through the various stages of their lives.

One of the more common themes was, of course, support; some face-time with other diabetics where you can just chat without the D hanging there like a low-lying apple, ready to fall into the middle of everything.  Just someone who really understands how frustrating things can be at times.

Just a few of the other topics included sports, caregivers, the issues women face and outreach efforts.  Not only to the diabetics we know about, but also to those who we don’t know about.  They probably don’t know who the heck we are either.  How can we reach them?

I know that we can’t be given lists of diabetics that various doctor’s in the community see.  That would certainly make it easier for us to “find” them (and go to jail) but I wonder if we could do it the other way around.  Give the doctors lists of local resources that they can either hand out or just have sitting in their offices.  That way, the patient has the info they need if they should choose to use it.

I think every advocacy blogger that I’ve ever read has asked this question: “How do we find the people that don’t know about us, about the support systems that are available.  How do we make them aware, get that info into their hands?”

That’s a damn good question.

Scott

Today’s snarky comment: You really didn’t think I’d do a post without at least one curse word did you?

©2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

  • Skarmstrong13

    Scott,

    This is awesome to hear and we are hoping to have the same thing go on in Alabama. Some ideas we have started to utilize ae websites, FB, twitter, word of mouth. Just talking about always leads to someone mentioning they know an adult with type 1 or a family with a type 1. Myself and @victoriacumbow are working very hard for our chapter to move to this “meet in person” concept. You can have all the tools in the world, but meeting IRL doesn’t compare.

    Thank you for sharing and I am so excited for you, jess and all the others who attended.

    Sarah
    @MoD4acure

  • i totally agree, scott! will get around to writing my own post about it next week. i’m excited to see where the group goes.

    and it was nice to see you too, i guess… 😉

  • Lauren

    I just meet with the Adult group through JDRF last night! It was really great and no children which is really rare for a JDRF event. Lol. I loved it! This sounds really awesome too!

  • Cool! Some regional JDRF offices are really small and lack a full-time Outreach staffer (which is not surprising, given that outreach still has a miniscule budget from HQ versus the organization’s primary focus, fund-raising for a cure). That’s where volunteers may need to come in to better serve type 1 adults. In Des Moines, for example, I’ve volunteered to hold a type 1 adult meet-up on behalf of JDRF. June 1, 7 p.m., Panera on 86th in Urbandale! The staff is really open to it becoming what participants want it to be, no agenda. I look forward to this new era of JDRF reaching out to the adult community. And, thinking we’ll have to get a Des Moines-KC type 1 adult competition of some sort planned, because there’s nothing like friendly rivalry!

  • That is awesome. I need to get in touch with my local JDRF to start doing this stuff.

  • Mike Hoskins

    Very cool, Scott! Glad to hear about this and that it went so well, and it’s really helpful to get the run-down of how it all came together and played out. We’ve had a number of those in the past year or so here in Indy, and have another Adult D-Meetup coming up this next Monday – Very excited about it! At a brewpub, too! We’re pretty low-key without any agenda, and in past have talked everything D and non-D. Have been doing after work hours, but may be looking to do a Bacon Breakfast style at some point. We’ve been using traditional tools like emails and word of mouth and JDRF web stuff, as well as Facebook and the new Type 1 Talk tool on there to get word out. Not many have used the latter to actually register, but we’ve got word that a handful saw it on Facebook and plan to attend. Sounds like many nationwide are seeing similar Adult outreach efforts, so it’ll be great to compare notes and help expand all of our outreach even more! Oh, and Kelly – I bet you a cupcake with GLITTER that INDY will rock it like rockstars do and serve up some rivalry… !!!! Oh yea, I said it. :-))))

  • type 1 advocate gramma

    I just got done reading Jess’ post as well. I am soooo excited to see that us PWoD’s are “getting it” finally! We DO understand that our kids grow up and will still have diabetes and STILL need support. The DOC shouldn’t have to be the only place PWD’s do not feel alone and I’m am so very excited to see that JDRF, with Jeffrey Brewer’s guidance, is coming around so well. My chapter is working on some ideas and our Hope and Health event brought a few more adults back..but I am so totally going to recommend the same kind of meeting you guys had! and FYI we have been trying to get our local endo’s to have the resources available in their offices and, for the most part, they are not very willing to do that..Might help if all of the DOC started asking their docs for a list of resources for help with Diabetes…Maybe then the doctors might realize you all WANT to know who and where you can turn for help!!

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