Tag Archives: jdrf

Keeping it Real, Making it Happen

Another year, another Social Media Summit organized by Roche. I was honored to be amongst the guests for a 2nd year and this time the experience was even better for me (not to mention I got to go to San Diego, which is beautiful and I want to visit again!). Not only because it was great to know that the diabetes social media community is making things happen, but because I was able to open up, get to know people better and even share more out of my comfort zone. Bear with me. This post will be all over the place, but I’m trying to recap as much as possible. Going through my twitter posts and making sense of all the hash tags.

Dan Kane from Roche made something very clear when we asked why we were there. Roche (and hopefully other companies) want to get to know us better so they can become better at what they do. And I think it’s wonderful that they’re turning to the real people, their customers, to know what we need and how we perceive them. We’re a tough crowd, I give you that, but that’s what I loved about the summit. We are not afraid to speak our minds, we demand answers, we demand actions (some way better than me because I tend to be a wallflower). And it’s working. It was amazing to hear about the results of the Big Blue Test campaign (2,000 children received the insulin they needed!), the efforts to help people in disaster areas like Missouri and Alabama and how Roche is making its products more accessible to people despite a low income.

We are not interested in hearing the facts about diabetes. We have years of experience and the marks on our fingers to prove it. So when the International Diabetes Federation speaker started presenting those facts, we weren’t that interested. What we wanted to know is what IDF is doing to help fight diabetes. Slowly but surely we got there, and I was grateful to hear about the Life for a Child program. I remember last year when I asked David Edelman and Manny Hernandez how we could help children in developing countries get the insulin they need. And now I see this happening, the IDF making it happen, and our social media community sharing it with results. And to hear IDF’s president, Mr. Jean Claude Mbanya, talk passionately about this cause inspired me even more to do something about it so you’ll be hearing a lot from me. There is no reason and no justice in the fact that there is more than enough insulin in the world, yet it’s not accessible to people in developing countries. “Accidents of geography and history determine who lives and dies of diabetes.” That doesn’t seem right at all.

Then there was Jeffrey Brewer, CEO of the JDRF. It is refreshing to listen to engaged people who really care about the diabetes cause and work hard toward it. People kept asking me if I was interested in what he had to say since I have type 2 diabetes and the JDRF is basically all about type 1. My answer was a big YES. I was very impressed and inspired by Mr. Brewer. I believe he’s a great worker and advocate, and he put the facts simple and clear. It is important for me to understand all types of diabetes and what different organizations are doing to fight the condition. If I want to advocate and help, I need to be informed. His speech was motivating, he wants results and he’s working on getting them. Because, when it comes to a cure, “It’s not about when it happens for a mouse. It’s about when it’s available to people in their doctor’s offices.”

And Dr. William Polonsky… that was a tough one! Many people seem to ignore that diabetes has a very strong emotional component. This is a chronic disease, the toll is heavy, the level of frustration insane. Mix that with other things like depression and you have a cocktail bomb ready to explode at any time. So it was all about taking a break from diabetes, a mini-vacation of sorts, but doing it smartly. The concept was easy to grab, now the practice is another thing. I started to hear all these stories about how people cope with diabetes and I knew I was going to end up crying. But then there are people like Sara who point an imaginary gun at you and make you talk… so I did. Way out of my comfort zone. I dislike public speaking, especially when it involves showing my vulnerabilities to a room full of people. But it was liberating and it helped me understand that I don’t need to carry the weight of the world on my shoulders. SO THANK YOU, SARA!

The sessions within the group were interesting. Four different topics, lots of discussion, lots of ideas. The main thing was about taking the O out of DOC and working on communities offline. From making information easier to find to working directly with our doctors and CDEs to reach a broader audience. Unfortunately there wasn’t much time to put it all together, but I’m counting on Todd Siesky’s report so I can leech of it and share more with my readers.

I don’t know what else is there to say. I could continue writing and writing… But I’m sure I’ll be posting about more specific topics as they pop out of my head. What an enriching experience this was. But most important, what an amazing group of human beings!