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.
Here’s the 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:
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!
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.