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Walking the Walk in Kansas City

This past Saturday, I participated in my first JDRF Walk for the Cure.   I have to say, it was a really amazing event.  I haven’t seen any official numbers, but they were expecting 10,000 people and to raise, I believe, $750,000.  Our adult T1 Team, “AT1 – We run on insulin” had raised $3,850 as of walk day (way to go  team!) and had some shirts made, designed by team member Andy Pitt.

Team AT1 - We Run on Insuling t-shirt back

Here’s the front

The "before" image of the t-shirt front

Now the idea was to take a marker and fill in the “blanks” of what you wanted to do to diabetes.  I got busy talking to some folks and didn’t get mine filled out before the walk started, so I filled it in afterward:

 

I want to "get all medieval on" diabetes

 

And yes, I realized I had misspelled “medieval” after the fact, of course… /facepalm

During the walk, a 2-mile stroll around the Legends area in Kansas City, KS (yes there is one in Missouri too), I spent quite a bit of time talking with my local Animas rep, Jason. We talked about pumping and how we were going to miss our favorite CDE, who recently accepted an opportunity in California.

Jason, who himself, is a T1 veteran of 24 years, was very open about how he encourages he customers to visit sites like TuDiabetes for information and support  and how that he also always encourages them to give feed back on their pumps.  He says that is really the only way Animas can make their pumping products work better for us and he is very much correct in that regard.

Now, most of you reading this aren’t too shy about speaking your minds, so as we move in to National Diabetes Month, take some time to do exactly that.  I plan to give a much more in-depth review of my Animas Ping than I did a few weeks ago.

Another point Jason raised, was that in speaking with patients and doctors, he felt that most patients were not intensive enough in their diabetes management.  Many often get started on pumping and may rarely, if ever, adjust any of their settings even if they are experiencing hypo- and hyperglycemic events.  That surprised me somewhat, thinking of the people I knew online. I then realized that most of the people online are the ones actively managing their condition.

How can we reach out to the others?  Is it an issue of denial?  Of isolation?  What can we do to help these people?  How can we find them in the first place?  Do they want to be found?  These may be the questions of the decade…

While this was the first walk I actually participated and raised funds for, I had visited one earlier this year and blogged about it in A Bitter-Sweet Experience. Also, in the past, I have been pretty harsh on the JDRF in some regards as an An Open Letter to the JDRF describes.

Since then, I’ve had, not only more in contact with the local chapter here in KC, but also the National Chapter and their advocacy efforts and now I have a better understanding of how things work.  In particular, I think I understand why there seems to just be a hodgepodge of local chapter’s outreach efforts to the adult Type 1 community.  I see that a local chapter’s focus is on fund-raising from the private sector and sometimes thing that don’t directly “work for the cure” get shoved to the back burner.

The National Level has taken criticism about the Artificial Pancreas Program (APP) because those resources are not being directed for a cure.  Well, guess what critics?  Those kids grow up.  Anything that can be done to help reduce the chance of long-term complications is well worth the resources.  While there are “immediate” issues such as dangerous hypoglycemic and hyperglycemic events, the real danger is much more insidious, the long-term complications that develop slowly.  Often unnoticed until they manifest themselves and then it is often too late.

So, critics, explain to me, why the HELL we wouldn’t want something to help these children grow into adults, have families, have grandchildren?  Why the HELL wouldn’t we want them to get the best care available and have the best life they possibly can?

I’ll stop ranting now and congratulate the Kansas City Chapter on their hugely successful walk and I look forward to continuing to take part with them in local events leading up to WDD and further Adult T1 outreach efforts!

Check out Fox4 News coverage of the event at  Walk Raises Money for Juvenile Diabetes!

Thanks, for stopping by!

Scott

Today’s snarky comment: Honestly people, the trick isn’t thinking outside the box.  The real trick, my friends, is realizing that you’re in the box in the first place.

  • Pingback: Walking the Walk in Kansas City - Strangely Diabetic - Juvenation()

  • So awesome! Those shirts are a great idea and Congrats for the funds raised! very cool indeed.

    Any chance that CDE is coming to Southern California? Sorry dude, I had to ask.

  • Kim

    Glad you had a good walk experience!

    The whole idea of an AP makes me incredibly nervous, but that’s my own thing, I think. I’m with you – anything that helps us live longer and healthier, I’m for. If they really do find a cure for this in my lifetime, you can bet I want to be as healthy as possible when that time comes around.

    • I think we should be a little nervous about it, afterall, we’d be turning our lives over to a machine. Kinda scary, I was nervous when I started the pump

  • I have you in my regular reads every week and figured out weeks ago that you were in KC. We too were in the KC JDRF Walk at Ledgends this weekend! My daughter was diagnosed Jan. 19th of this year with Type 1 (she’s 4). My mother LOVED your shirts!!! She made comments every time she saw one of your walkers!
    As for the pancrease machine…yea, it’s not a cure, no I’m not getting the first model out on the shelves for my little girl, but I am totally totally hoping they can get one up and running by the time my daughter is an adult. The cure? I hope, but I know better than to expect. That walk was awesome wasn’t it?! Just perfect! See you next year!!!
    Sara (from Topeka).

    • Nice to meet you Sara, I expect we’ll see an AP way before your daughter is an adult…

      I thought the shirt design was brilliant as well, your mom has good taste!

      I’m glad you guys made the trip from Topeka and wish you the best!

  • Great post and great Walk efforts, Scott! Those shirts ROCK! On the JDRF front, I’m totally with you. It just amazes me how people cringe at anything not directly “cure” related… Like those efforts such as the Artificial Pancreas are just wasted dollars that can be overlooked and shoved aside for some greater picure. You know, doesn’t it seem pretty obvious that developing better D-Management tools and studying the research involved in those items might actually HELP the cure efforts? This is all part of the same game, you idiot critics. Please. Get a clue. Ok. I’m going away now… Thanks for this and all else, Scott!

  • Lorraine

    Very impressive Scott. I love the shirts – quite creative. I’m glad it was a good experience.

  • I love the shirts man! And what an awesome turnout for the event. I love to see that.

    Who knows where things are going, but I do know that there are a LOT of really smart people working hard to make things better for us. I’m Ok with that, in fact I’m very thankful for it.

  • Hi Scott,
    I just did my first JDRF walk too. It was a very inspiring event. I love your t-shirts.

    As for the Artificial Pancreas Project, I’m leery. I have had a pump and a CGM, but still feel I would only be comfortable with my brain in between. I have had the amazing privilege of having an islet cell transplant. I feel great and am really enjoying my many new freedoms. I am a big fan of the JDRF, but would rather see research aimed at a biological cure funded. I feel that my experience is proof as to how close we really are to the cure.

  • My husband and I don’t really talk about or think about a cure. If they discover a real cure, then great, we’ll look into it (because being on anti-rejection drugs, etc. is no cure).

    We do however have great interest in better management tools to keep our daughter healthy and to give her the most “normal” life she can have.

    I want research in both areas. Some people may not want the first so-called cure researchers come up with. And it may take years and years for a cure to be available to the masses.

    Why not use technology that is out there to develop a way to help people better manage their diabetes NOW so that they are in good health and good spirits for when a real cure does come to fruition.

    We had our walk two weekends ago. Our walk is much smaller and our team didn’t raise thousands. But we walk together in support of our daughter.

    Great post, Scott.

    • I think that’s right Leighann. In the end, diabetes itself does not kill you, but complications do. Just kind of ignoring hypo and dka events in that statement. Anything that can be done to prevent those complications is worth it in my book