I have to admit… when I headed to my fifth JDRF Research Summit in Bethesda, Maryland on Saturday, I just didn’t know if it was going to be worth it. Would I see or hear anything new or different? And how, after writing about it for four years in a row… how in the world would I find a way to write about it again? I mean, I couldn’t even think of an interesting headline to write this time.
But this JDRF event was different. There were several moments that were different from the other four years of this gathering. The TypeOneNation summit has grown up, in more ways than one. It has evolved somewhat. Let me share:
Our day began with several breakout sessions, where kids, teens, and adults went to separate rooms and discussed things that are important to them. Our adult T1D group included a panel comprised of medical professionals, a lawyer, an expert in exercise and living with diabetes, and JDRF’s VP of Advocacy and Policy. It was a full hour-long question and answer session on all of these subjects. Maybe it was familiarity, or maybe it was because it’s been on my mind a lot, but I asked the first question, and for fifteen minutes or so, we had a lively advocacy discussion. Eventually, we did cover all the subjects mentioned above.
But the really interesting thing to me was that there were, by my count, 40 to 50 adults in the room. A year ago, our adult breakout group was maybe 15 to 20. Two years earlier, I think I met one or two adults with diabetes the entire day. In my humble opinion, JDRF still has a long way to go in engaging adults in ways that will help both them and the organization, but there’s no question– JDRF is growing up. Compared to last year’s summit and the year before? Big, positive difference.
Once we were all gathered in the big room for the day, Aaron Kowalski got into where JDRF is on a number of research initiatives that it funds. Aaron is as good as anyone at giving people a comprehensive rundown on the status of artificial pancreas research, who has skin in the game, and where each group is in terms of product and potential approval. I know there were some returnees in attendance, and for those who were only beginning to hear about artificial pancreas a few years ago, Aaron’s talk was a great update.
Continuing on the research front, Dr. Juan Dominguez-Bendala from Diabetes Research Institute in Miami was able to fill us in on where they are with stem cell therapy development. It was very detailed, so I can’t really give it justice here. To be honest, I’m not really jazzed about this kind of research, because I can’t quite see where it will be practical for a long, long time. But what I did like about Dr. Dominguez-Bendala’s presentation was his willingness to address the limitations of stem cell therapy, including ViaCyte, that exist today. I think that helped me recognize that while there’s a lot left to do, DRI has come an awfully long way since they began this kind of research.
And for the first time, the psychosocial impact of living with Type 1 Diabetes was discussed. This presentation was made by three pediatric psychologists, so the discussion was entirely kid-based. There was no patient perspective provided, and though I don’t know how they would have worked that out, I think it would have been great. Also, there were definitely questions from adults looking for resources to help them too. I made sure I followed up with those people individually to let them know about the Diabetes UnConference (Hello Doris and Jenny!).
Finally, it was Brian Herrick with a light, and at times, funny presentation about 25 years of living with Type 1, and his experiences going through artificial pancreas clinical trials, which was a great way to wrap up. After another Q&A session with all of the presenters, the summit was complete, save for an adults-only happy hour at the hotel next door. The main part of the program was over earlier this time, which likely resulted in less glazed over eyes late in the afternoon. Finishing on a lighter note helped everyone feel good as they headed home.
I should also mention that the best part of the day was getting to meet new friends, and spending time with Diabetes UnConference alumni Leyla and Terri.
Leyla is one of the coordinators of the March for Health in Washington, D.C. on April 1st. Time with them was worth the trip in and of itself.
So… while I began my day wondering what would be different, and how I would cover it, as you can see, there was plenty that was noteworthy this time. All in all, a great way to spend a Saturday.
If you are living in the USA, chances are there is a TypeOneNation event near you. To find out more, go to jdrfsummit.org and find out where your free summit will take place.