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Meeting Some Other Adult T1’s Here in Kansas City

Last Wednesday evening I had the pleasure of attending my first JDRF KC AT1 (Adult Type 1) get together.  All in all, it was a great experience.  Met some great folks involved with the JDRF here in Kansas City.  This was more of a social gathering at a local restaurant where the JDRF ordered a couple of pizzas and everyone paid for their own adult beverages of choice.

Most of the “official” business involved fund-raising activities here in KC, especially the upcoming walk in October.  A number of suggestions were made on how individual could potentially raise funds at their place of work; such as a Jeans Day.  Donate $5 and you can wear jeans on one particular day.

For the last 30-odd years, I’ve always felt pretty left out by the JDRF and I think there are many other T1’s that feel the same way; as Invisible Sufferers of an Invisible Disease.   And I’m sure that has given me a jaded view of things.

A few things have started to change my opinion though.  Attending my first ever JDRF Walk was described in A Bitter-Sweet Experience.

Having members of the JDRF reach out to me after An Open Letter to the JDRF.

Having a nearly two-hour long conversation with the Mike Kondratick, Director of the JDRF Grassroots Advocacy Program (more on that discussion in a two-part post during National Invisible Chronic Illness Week, September 13-17).

Seeing the JDRF actually give some recognition to World Diabetes Day (WDD) by moving their Type 1 Talk event from November 6th to WDD on November 14th.  You should start hearing more about that in the next few weeks.

I’m wanting to be more involved, but I still am not really that interested in fund-raising.  Yes, I realize that is the core mission of not only the local JDRF chapters but the federal level as well.  And finding the cure is the ultimate goal of anyone whose life has been touched by diabetes.

But, honestly?  Being focused on fund-raising does not really assist us in dealing with diabetes on a daily level.  That is up to us to do and what I see happening is that the JDRF is starting to utilize the tools at their disposal to help us find each other.  Facilitating meet-ups that are not necessarily focused on fund-raising, but having presentations of interest to the Adult T1 crowd and sometimes just to sit down and just visit.

That is something that is just starting to happen in some places, while it has been going on for quite a while in others.  I’d like to see more of an over-arching policy from the national level to the local chapters; at least providing them some guidance with outreach to the Adult T1 audience as something other than volunteers or fund-raisers.

It is something that those of use out here in the real world have realized for a long time.  We all know what it is like and we need to be able to interact with others that are “in our demographic”.  The internet has made it much easier to find others on-line and that is an incredible community.

But sometimes, you just want to sit down face-to-face and actually hear what they are saying, body language is so important to really understand a person and that is often lost in today’s text, tweet, email, and blog filled world we live in.

  • I agree that I would rather focus on our day to day struggles. Fund raising for a cure should still happen but that is not where I want to be involved either.

    Sounds like good stuff is happening.

  • Great post, Scott! Coincidentally, I actually wrote up a post myself today about a recent JDRF-organized Adult Type 1 meetup we had in Indy. Only four of us, but still some great talk over seafood and beer and it was more of a social gathering than anything with “official business.” Think more are doing this nationally, but it is largely dependent on the locals to get it off the ground. I’m the same way as you say – feel forgotten by the JDRF sine age 18, except for the semi-regular fundraising requests thrown my way. At least we have a starting point, and I think those smaller, personal, non-biz meetups are the way to change perspectives and even get more people involved! Look forward to hearing more about how it goes on your end in KC, as well as other spots in the DOC!

    • Well… wasn’t THAT much of a coincidence… lol, read yours and remembered that I needed to finish mine up!

  • If I still lived in Overland Park, I’d be there!

    • we’ll save you a spot if you ever pass thru town again!

  • I attended an ADA meeting. I let them know I suck at fundraising but I will talk about diabetes with others all day. My mom never taught me how to fund raise. I guess I may have to start somewhere. Who knows? I’m all about meet-ups, education and awareness.

    • lol, I am not even good at handing out info at an event… need to learn how to “mingle”. The TCYOD event should be interesting, hopefully ScottieJ can give me some pointers at the DHF/ booth

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