#JDRFSummit 2013, Part Two.

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There was a lot of information shared during the Summit last Saturday (don’t miss Part One), and not all of it was during the formal sessions. But I’ll begin with that, in the second part of the day, and cover some other things at the end. So if any of this starts to bore you, remember to check out the end of this post.

The second part of the day started with Roy Beck from the T1D Exchange. Roy is founder and Executive Director of the Jaeb Center for Health Research in Florida. Right now, T1D Exchange operates in three parts: A Clinic Registry, with over 65 clinics participating and 26,000 individual participants; A Biorepository, sharing and exchanging meaningful data related to diabetes; And MyGlu.org, which “is an active and diverse type 1 diabetes (T1D) online community designed to accelerate research and amplify the collective voice of those living with T1D”. Roy revealed some very interesting statistics that they’ve compiled from their participants. As in… All of the T1D Exchange participants were averaging home BG monitoring at least 5 to 6 times per day. But also in the data is the fact that none of the participant age groups had hemoglobin A1c results under 7.4. The numbers were better for those using a pump, but overall, they still averaged 7.4 or higher in all age groups. Wow.

To finish out the day were a couple of Andersons. Daniel Anderson, PhD, talked about new materials and drug delivery systems as they relate to possible islet cell encapsulation. The idea is not to create a little pancreas, but to create lots of little pancreases to start doing what the original gave up on a while ago. Drug therapy would have to come up with something that would keep the beta cells from coming under attack after the surgery to encapsulate, but still be able to detect glucose, and help foster an environment that would produce insulin.

Randy Anderson, PhD, provided a lot of detail about commercial development of drug/bio products to treat and possibly cure diabetes. He told us that there were 12 products related to diabetes in commercial development back in 2004. Today there are 94. He spoke about Roche’s Diaport idea. And his feeling is that the best hope in this area would probably be something called a Curative Hematopoietic Stem Cell transplant. His description kind of went over our heads at the table we were sitting at. Plus, we wondered about the availability of viable stem cells. But the ideas expressed were interesting, and I want to do a little more investigation about this.

Okay… Yesterday, I mentioned a few brushes with D-celebrities:

In the exhibit/vendor space, I came across Christopher Angell from Glucolift and his dad. Always ready with a smile and a handshake, I was happy to see they were doing well. But I need to remember to catch up to them early, before they sell out of everything.

I met Amy Ryan, who’s out promoting her book, Shot: Staying Alive With Diabetes. It’s the first D-book I can ever remember reading (other than one on my day of diagnosis– but that’s another story), and I’m enjoying it so far. There may be more in this space about it later.

I got an unexpected surprise in meeting Scott Strumello and Bennet Dunlap. They were in the exhibit space talking Diabetes Advocates, Diabetes Hands Foundation, and Friends for Life. Always nice to put a face with a name, and Scott asks great questions.

Oh, and I inadvertently got to meet Miss America 1999 and T1D Nicole Johnson, the event moderator. At the lunch break I realized I had left my meter in my truck. So I headed across the room since that was the general direction I needed to go. I stopped to say hello to Molly McElwee from the UVA Artificial Pancreas team, and then I turned and practically ran into Nicole. She said “Here’s a guy who looks like he knows what he’s doing”, and asked if I would snap a photo of her and a fan. So I did. I feel a little guilty about admitting this, but I sort of messed up the first one just so I would have to take a second:). Don’t ask me why I didn’t get a photo for myself. It just didn’t occur to me at the time.

All in all, a great day filled with lively discussion, some of it over my head at times, but nonetheless very enlightening. Also, the lunch talk with my table mates, who are parents of Type 1 kids, was worth the trip all in itself. It might not seem like it, but I’m hearing that T1D kids are growing up in the USA with increasingly less stigma tied to diabetes. In other words, while things are far from perfect, they’re living more normal lives than similar kids have ever lived. Here’s hoping their lives will someday include a cure for this curse upon us all.
 
 
 

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Comments

  • Karen  On March 13, 2013 at 5:17 pm

    Wow, the whole summit sounds like it was so great!!! Thanks for recapping it for us.

    Like

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