#JDRFSummit 2013, Part One.

Saturday was a beautiful, sunny early March day. And I spent it inside, at the 2013 JDRF Type 1 Diabetes Research Summit. As I mentioned in last Friday’s post, it was a day filled with lots of discussion and presentations on Artificial Pancreas development, islet cell research, and more. Also, a few brushes with D-celebrities. Many thanks to the local JDRF people who made this event happen. I don’t know how you did it with so few volunteers, but it was great.

Diving right in…

We were welcomed by Tad Wood, Executive Director of Maryland’s JDRF chapter, and a wicked bike rider. Look for him at the ride for a cure in Vermont later this year. Our moderator throughout the day was Miss America 1999 and fellow T1D Nicole Johnson, who stressed how cool it was that there were so many families in attendance (there was a separate children’s program). She talked about our “AHA” moments, and I suppose there were more than a few for some at this event.

Bill Parsons, JDRF International board member and chief of staff to congressman Chris Van Hollen of Maryland, gave the JDRF “Less Until None” speech. The idea is to systematically remove the burden of diabetes until a cure can be found. That means making diabetes less of a burden for patients, less invasive, with less complexity. That would be nice.

Next up was the Artificial Pancreas team from the Center for Diabetes Technology at the University of Virginia. They covered a lot of the ground that I’ve already covered in this space (click here for more). What was really interesting to me were two things: One, I enjoyed looking around the room and watching the look on people’s faces when it clicked and they finally understood what all this Artificial Pancreas stuff meant. Two, the part about the remote monitoring that I wrote about in this post. When parents saw this, there was an immediate reaction. In short, parents want this like now. Later, at the question and answer session with the panelists, they were asked if they had contemplated releasing the remote monitoring prior to any AP approval. It wasn’t said, but I’m thinking this is not happening right now, even though it would be great. First, for it to work the way it’s designed right now, it requires an AP device, which hasn’t been approved yet. But, I’m wondering… could there be an app for that in the future? In other words, the CGM data uploads to an app on your mobile phone in real time, and the information is made available in a secure way through mobile technology. In theory, it sounds doable to me, but it would also require resources from the AP project to work on this piece alone. My guess is that JDRF is not funding something like that right now, but again, it would be great.

Also included was a talk from clinical nurse trial coordinator Molly McElwee, another Type 1 who spoke about her own experiences working on the project. She spoke about her worst day with diabetes (she described her talk as her own “Diabetes Naked”, in front of everyone). She took the low she experienced from that day, her pump and CGM data, and they put it through an AP algorithm at the center. In the algorithm, she would have received an alarm 37.2 minutes prior to hitting the 70 mg/dL mark, telling her she was trending down quickly. How cool is that?

Now, let’s get into islet cell talk. Chris Newgard, PhD, spoke with a great deal of passion about the research that’s being done to both discover why islet cells die in people with Type 1 Diabetes, and why it’s been so difficult to figure out how to successfully implant islet cells and make them expand. He feels they’re getting closer, and there are a few possible ideas being investigated. Including something that looks a lot to me like the BioHub thing that everyone was complaining about last week. I have my doubts, frankly… but even if islet cell transplantation or expansion of functional cells doesn’t happen, they’re still learning an awful lot about this important aspect of Type 1 Diabetes.

All right… I can see that this is getting long already. So there will have to be a part 2, hopefully tomorrow. So much to share with you.

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  • Karen  On March 12, 2013 at 5:08 pm

    Thank you for sharing that today, and looking forward to hearing the rest!! 🙂


  • Scott K. Johnson  On March 12, 2013 at 6:57 pm

    Sounds great, Stephen! Thanks for sharing.

    Isn’t Molly great? I met her recently and thought she was fabulous. Glad she had a chance to speak, and glad you were there to listen.


    • StephenS  On March 13, 2013 at 7:06 am

      Molly is super smart with a great story to tell. Everyone I know who’s met her feels the same way you do!


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