Monday, August 30, 2010

D-Meetup: 84 Years of Diabetes

Adult Type 1s are mobilizing in Central Indiana, trying to reach out and bring more of us together in a way that the JDRF hasn't traditionally done or been known for. We want that to change.

Some of us gathered Thursday for the first D-Meet-up of many, which will hopefully bring more into the fold as time goes on. At Joe's Crabshack on the north side of Indianapolis, four of us gathered:

Myself, diagnosed at age 5 back in 1984.
Neal Hoffman, a 28-year-old diagnosed at age 12.
Aaron Walton, a 29-year-old diagnosed about two years ago.
Pat Kinder, diagnosed about 40 years ago when he was in the eighth grade.

Between the four of us, we have 84 years of diabetes. Looking at that time in history more than eight decades ago, we'd be at a time where insulin had just been created a handful of years earlier and D-Management was so incredibly different than it is today. No testing as we know it today. Significantly, we have Novo Nordisk receiving a Danish charter that year to produce insulin. Another monumental moment in 1926 when scientist John Jacob Abel crystallized insulin. This was the first proteins to be crystallized in pure form, allowing researchers to study its structure and how it acts within the body, and ultimately giving them the ability to create stronger and synthetic versions decades later.

That's where our combined years of Type 1 takes us back into history, and I thought that was cool. But this wasn't a meetup about history. Rather, it was an effort to look to the future and how more Adult Type 1s can come together. It's not new that the JDRF is reaching out to us Children With Diabetes Who Grew Up, though some areas are doing better at this than others. (Some others who've written about Adult Type 1 meetups include Scott Johnson in Minneapolis and Scott Strange in Kansas City, just to name a few!) Central Indiana is about a year in to an initiative to beef up its efforts on this front, and after some outreach meetings discussing possibilities this D-Meetup came to be.

Though I'd sat in on an outreach meeting where this concept was brainstormed, I hadn't heard of anything materializing until casually looking at the JDRF Indiana webpage one day in mid-July and seeing an announcement about this "Kick Off Event." Surprised, but so incredibly excited, I immediately checked my calendar and signed up to attend. Over the next month, a handful of others also signed up as Yes or Maybe attendees, while several couldn't make it. When Thursday finally arrived and some just weren't able to attend as planned, the Four of Guys With 84 Years made it out at the end of a crazy workday.

After some intros about who were are and our D-Life synopses, we got down to business. Not to mention some shrimp, crab-stuffed mushrooms, and seafood fondue! We talked about the changes we've seen through the years, and how our own experiences and D-Management habits are different. It was interesting to hear how diabetes helped shape our lives in various ways. Pat was interested in the whole DOC concept, to which I gladly helped introduce him and explain how it's been such a life-changing part of my life in the past year.

We mentioned how we weren't impressed with the ADA efforts to touch on Type 1, and how we thought the Diabetes Forecast magazine just wasn't really worth reading for the most part because it didn't include much that we needed in our D-Lives. Another point that came up was how cool the JDRF Galas are to attend, but coming up with the steep ticket price just turns many people away from the idea. That all needs addressing, we agreed.

Aaron asked me about why I'd gone off my Minimed 722, and I explained it had nothing to do with any dissatisfaction with the device or concept. Rather, it was just a means to give my body a needed rest after nine years of pumping. Neal and Pat mentioned how they found injections were easier for them.

The cool Bag of Hope program came up, and the trio diagnosed as kids reflected on how we didn't have that back in the day of our diagnosis. One component is Rufus, the bear with diabetes, and someone mentioned how the JDRF is talking about coming up with some Bag of Hope for Adult Type 1s. Now, that would be even more cool, I thought!

I shared some of the most widely known D-Bloggers out there who've laid the foundation for what is today's ever-evolving DOC. Talked about how it also helps hear from others in the Diabetes Community (adults and parents and others) about what's happening out there, from JDRF activities to just the personal stories about "routine" D-Life activities. Pat was intrigued by the D-Blogging concept, and we were able to share some nostalgic memories of both the Commodore 64 as well as the ancient Atari-based systems that blessed our younger years. We decided that Facebook and the broader DOC is one way to tap into this crowd, but that going offline and establishing one-on-one relationships is the best move of any. Then, we can all network with the larger groups down the road and even set up more official business-like "events" that people will be more eager to attend with those friends they've established.

So, that's where we are at this point. Some personal meetups that lead to a bigger one. The point: If you are an Adult Type 1 in Central Indiana, then I WANT YOU! Drop me a line and let me know what works in getting together for lunch, dinner, coffee, drinks, or just to hangout for a "pump bump" or "meter clap." I'm eager to connect and meetup! In the meantime, we move onward until the next D-Meetup "event" set for Sept. 30! Hopefully at that time, we can at least get a century of diabetes experience in the same place for some good times!

4 comments:

Penny said...

Oh that sounds like some good times Michael! D meet-ups are the best.
I agree about the Diabetes Forecast - not worth skimming for the measly bone they throw T1s. And JDRF 'Galas' - well, $150 to socialize, no thanks. Do more for the T1s living with this disease. I am starting to sour on JDRF and my T1 gal is only 8 and only 2 years into this journey.

Kim said...

Sounds like a fun experience. I need to look into the local chapters here and see if they organize any T1 adult meet-ups.

Agreed on the Forecast magazine, and the JDRF Gala - I went one year, and that was plenty for a while. :)

Anonymous said...

I'm a (young) adult in relatively central Indiana with T1! I go to IU Bloomington, but I would definitely be down for a drive to Indy for D meet ups. (I'm afaughn on twitter- we've talked about IN a few times during dsma.) Since I'm doing the school thing, my schedule is sporadic, but evenings are easiest to allow for travel to Indy after class :) I'd love to hear more about the Sep. 30 meet-up, and I have a few friends that I could share any info with as well.

The Chocolate Cheerio said...

Also- I'm not sure why I posted that last comment posted as anonymous (oops). I'm Alyssa.