Participating in JDRF's Type 1 Talk.
When I arrived at the JDRF Type 1 Talk event in NYC, joining Aaron Kowalski (JDRF's Assistant VP for Treatment Therapies), Lorraine Stiehl (JDRF's National Chair of Grassroots Advocacy), Dick Insel (JDRF's Chief Scientific Officer), and Rachel Steinhardt (JDRF's National Director of Marketing and Communications) on the panel, I realized that I was the only person who wasn't directly tied to the JDRF organization. Honestly, I felt a little like the wild card.
So why was I there? In short: to represent our community as best I could.
We had Rachel from the JDRF marketing side, Dick and Aaron from the research side, Lorraine from the advocacy Side, and then me, representing … well, the "plain ol' people with diabetes" side. I wasn't there for the JDRF. They were my gracious hosts, and I'm thankful that they thought of my voice (and my incessant cough) for this event, but I'm not their mouthpiece. For me, our diabetes community comes first, and all organizations come second.
Many of the questions were aimed at research efforts, including cure efforts and the Artificial Pancreas Project, and Rachel shared many of the resources that the JDRF has available to the community. And I listened attentively to their answers, and contributed as I saw fit - you can watch the video for the nitty gritty details. But I can't claim to know all the nuances of what they were talking about. There were a lot of moments of silence from me because I didn't have much to say in terms of research and government advocacy. But I still said my piece, and wanted to bring the discussion back to helping the community as much as possible. And I felt like I was listened to, and actually HEARD. Big organizations care what we, as a community, have to say, and just the thought of that respect makes me so proud of what we've created.
Type 1 Talk, and World Diabetes Day (and Diabetes Month, for that matter), opened my eyes to a few of the problems, on a diabetes awareness level. Here are the top three that kept coming up for me:
- Sure, we wore blue and tested in tandem on Sunday, but we can't help but be aware of diabetes. We live with it every day. What about the people who aren't in the diabetes community? I want to find ways to burst the diabetes bubble. I know we're all blogging and listening to one another, but how are we stepping outside of the D-OC comfort zone and educating the people who truly don't have a clue? How do we make diabetes less of an invisible disease and more part of the information mainstream?
- Also, I know that there is a lot of focus on children with type 1 diabetes, but thankfully many children with type 1 diabetes grow up. And we become adults with type 1 diabetes. The adults with type 1 community is getting a bigger piece of the representation pie - like the adults with diabetes sessions that are being added to Friends for Life, and the adults with type 1 toolkit on the JDRF site - and this progress is thanks, in large part, to our passionate diabetes blogging community. Adults with type 1 deserve, and are now beginning to have, a real voice in these organizations.
- And thirdly, I feel that there needs to be more support for the extended diabetes community, namely the caregivers of people with diabetes. Whether you're the spouse of a diabetic (love you, Chris), or the parent of one, or the best friend of one, you ARE part of this community and you need support as well. Someone quotes a statistic that there are almost three million people living with type 1 diabetes in the United States. To me, that number of people in our community swells exponentially when I think about everyone who loves that one person with diabetes. Our community is bigger than we realize, and for those living closely with diabetics, they deserve some resources of their own to lean on.
"Just because we make diabetes look easy, it's not. And just because we make it seem like it's something we can live with and we can have this big, full life - which we can, but at the same time, it can be very challenging. I think the one thing that I want to leave us with is that just because we don't look sick, doesn't mean we don't still deserve a cure."
I think this event was a great way to get some discussions going, not only within organizations themselves, but with the diabetes community as a whole. Thanks to everyone who took the time to tune in, and thanks to the JDRF for hosting this event!
Full disclosure: The JDRF paid my travel and lodging, but did not compensate me for speaking. My opinions weren't paid for, per usual. :)