Moments of advocacy

Others have done a great job summarizing the facts of the Roche Social Media Summit so I will not try to repeat that here. If you want to know more about the details of our discussions, read this excellent summary by Cara.

Instead I will try to share about the “moments” (blog reference ftw) that were important to me. For me, capturing moments means taking pictures so there will be a bit of image overload here.

I was the first of the summit invites to arrive in Indianapolis on Sunday. I grabbed a snack and waited for the group that was scheduled to arrive about 30 minutes after me. As we headed down the escalator, I saw the first image that needed to be captured. Yes, on the floor in the airport.

Thanks for the picture K2!

I spent most of Sunday waiting for the rest of the group to arrive, working on some offline projects, and redeeming the soda owned to me by Chris. We had a group dinner that night, but the real action didn’t start until Monday.


And what was the sign that the real work had begun? It’s not a diabetes conference until someone stains the tablecloth. This was the fourth annual social media summit, so we had an interesting discussion about how the world of diabetes advocacy and interaction with “big pharma” has changed in the past four years.


Some of the positive changes that we have seen in the past four years have included organized advocacy project like DSMA and the You Can Do This Project. There is increased awareness of what it means to live with type 1 diabetes as an adult – breaking the stereotypes and misconceptions about juvenile diabetes. Our community is so large and so diverse that we have power that we have only begun to realize.

At its basic definition, advocacy is speaking on behalf of a group or a cause. An advocate is someone who defends or comforts another person. For some people, their advocacy is seen mostly online. They organize large-scale projects and programs to benefit the hearts and the souls of the diabetes community. Other people are top fundraisers for their local JDRF or ADA chapters or faithfully volunteer to visit the newly diagnosed in the hospital. Still others work primarily to educate the largely uninformed general public on the basic signs, symptoms, and facts about diabetes. We may never know about any of them beyond those in our communities because they don’t mention one word of it online. It is all advocacy.

Whew! Insert dance break.

I am a storyteller. I share the moments of MY life. I found the community when I felt alone. My goal is to now help people not feel alone. I don’t understand much about diabetes data technology or what goes on at the FDA. But there are diabetes advocates who understand all of it and are passionate about fighting through the regulations for the rest of us.

They probably had an idea what this group was talking about during lunch, while I had no idea. I am thankful that their form of advocacy will get me one step closer to the device integration and data accessibility that I want.

After lunch we headed over to the manufacturing area to observe the process of making test strips. We weren’t allowed to take pictures of the process but they had a display of the various Accu-chek meters in the lobby.

My first meter was the Accu-chek meter on the right. At the time “they” thought I had Type 2 diabetes and could control it with diet and exercise. I remember the 30 second wait time and the frustration I felt at my perceived inability to do anything with the results.

When I ended up in the hospital in DKA and received my accurate diagnosis, I remember crying and begging for a different meter because I could not imagine testing as often as they wanted me to with a meter that only gave bad results.

Of course it wasn’t the meter’s fault but at the time my brain couldn’t separate the meter from my body’s lack of insulin production. It was nice to attach some new memories to the Accu-chek meters. However, my favorite part of the tour had to be the hairnets.

The group attended a minor league baseball game that night and participated in related shenanigans. I took a prom picture with a questionable mascot and Kerri took over Chris’ podcast, but we still managed to win the game.

We heard from Josh Bleill on Monday, and on Tuesday morning we heard from Stephen Richert from Living Vertical. Go to and “like” the video there, and Roche will donate $1 for each “like” to his project.

Other than those who arrived early in Indianapolis for meeting and friends, I was the first to arrive. Other than those who stayed in Indianapolis for AADE, I was the last to leave. I am not complaining; it gave me plenty of time for great conversations and sweet pictures.

In other news: Warm fuzzies wear glasses.

In case you missed it, the little video that Kim and I put together for Wendy’s daughter was somehow picked up in a story on the CNN website (it is the hyperlink behind “aesthetics of the body” in the third section).

It turns out the worries of a nine year old girl touch the same worries of the rest of us.

P.P.S. Roche Social Media Summit Disclosure: Roche Diagnostics paid for transportation, meals and my hotel room during the summit. Participants were given a welcome bag with a few sample items and a few well-timed low treatments. I was not paid to attend or write about the summit.


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