People are talking: #JDRFSummit Part two.

Saturday I was one of the many at the extremely well-attended JDRF TypeOneNation DC Research Summit, in suburban Washington. Lots of updates on research all over the diabetes spectrum, and a chance to interact with some of the attendees. Including one I was able to meet for the first time. There was an awful lot packed into one day, so I’ve broken it out into three days of posts. Yesterday, I covered the morning’s presentations. Today, I’ll cover the afternoon talks. On Wednesday, my interactions with summit attendees and a DOC meetup!

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As I said above, there were lots of presentations Saturday. Before the main talks of the afternoon, there was a passionate advocacy update from Cynthia Rice, Senior VP of Advocacy and Policy at JDRF. To this observer, it seems like JDRF is working hard to expand their advocacy. Children’s Congress, Promise meetings with legislators, multiple outreach efforts. JDRF is advocating for all of us living with diabetes. Want to get involved? It’s easier than ever. To sign up, visit the JDRF Advocacy website here. Also, you can get advocacy updates on your mobile phone by texting ACTION to 53731 (JDRF1). Simple, yes?

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After that was one of the best presentations of the day. Dr. Linda Gonder-Frederick, Clinical Director of the Behavioral Medicine Center, part of the University of Virginia Health System. In her talk, she looked at diabetes from a psychological perspective. I remembered meeting her in the course of one of my clinical trials last year. She seemed smart then, and smarter Saturday. A couple of the things she had to say:

“It is well documented that diabetes is the most difficult condition for patients to manage.”

“Think of diabetics like a snowflake… no two are the same.”

According to Dr. Gonder-Frederick, there are four coping strategies that serve PWDs well: Information gathering, problem solving, empowerment, healthy acceptance, dealing with negative emotions, and social support and appropriate help seeking. It’s not a surprise that rates of depression in people with diabetes is almost twice that among non-PWDs. Critical periods for psychosocial risk in PWDs include diagnosis, any time there’s a real change in care or treatment, and the transition from a pediatric medical support system to adult medical support. In fact, she told us that this is the time when most patients get lost in the system. The transition from pediatric to adult care is that hard sometimes.

Honestly, I’m not doing her talk any justice. If you get a chance to hear Dr. Gonder-Frederick speak, I highly recommend it.

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The next two presentations were very scientific, and to tell you the truth, there was a lot of information given in a short amount of time. Let me see if I can give you the highlights from talks by Dr. Eugene Brandon of Viacyte, and Dr. Stephen Miller from Northwestern University Medical School.

Dr. Brandon covered the things that Viacyte is working on in the field of beta cell encapsulation, and how their research is going. The good news is that encapsulation human trials are scheduled to start this year.

Dr. Miller spent some time going over important research into nanoscience and immunology. Specifically, the difference between immunosuppressants and tolerance therapy. The appeal is the hope that immune tolerance therapy could be used to treat autoimmune disease, so (possibly) Type 1 diabetes could be averted altogether.

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Finally, we got to hear Kelly Close of Close Concerns and Diatribe fame. Kelly’s an amazing advocate, and she’s been involved in artificial pancreas trials in both Boston and Virginia. In fact, she was a participant in the study I got booted from in January. It was great listening to her talk about what closed-loop testing is like, and mostly, what it feels like. That’s really what I wanted to hear, and I wasn’t disappointed. It was fascinating listening to her talk about the dichotomy of being connected to medical devices, but feeling normal throughout the night. No lows or highs to sap her energy or make her feel hung over the next morning. She also gave a great roundup on where diabetes technology stands today all over the world. Which is pretty exciting to say the least.

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If you’re thinking it was a full day, you’re right. And that was just what was on stage last Saturday. Wednesday, we’ll talk about my interactions with a couple of the summit attendees, and my meetup with one of my favorite writers.
 
 
 

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Comments

  • Colleen  On March 4, 2014 at 5:33 pm

    Thanks, I enjoyed reading this. Almost enough to make me wish we lived in the DC area again. Well, sort of…

  • Kelley  On March 5, 2014 at 10:02 am

    So true what Dr. Gonder-Frederick said about the transition from pediatric care to adult care. I think this was probably the most difficult time for me (at least that I can remember). The scientific speeches were a little over my head but my hubby described it to me :-P. I loved Kelly’s talk!

    Great summary :)

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