Category Archives: Events

2017 JDRF #TypeOneNation #DC Summit.

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.

The Diabetes UnConference Las Vegas: Mission Accomplished.

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Welcomed.

Valued.

Respected.

The Diabetes UnConference Las Vegas 2017 is complete. Sessions ended, rooms and signs cleaned up, final dinners and goodbyes over.

My number one goal as a facilitator has been to make each attendee feel welcomed, valued, and respected throughout the weekend. It’s a job I take very seriously.

I want attendees to feel Welcomed as a member of the tribe forever. They will never be alone.

I want them to feel Valued as a human being with an important voice in a growing and increasingly diverse community. Valued as an expert in their diabetes, or valued for their walk with someone they love who lives with diabetes.

I want them to feel Respected in a safe, encouraging, empowering environment where their voice is just as important and worthy of attention as everyone else’s in the room.

Our group in Las Vegas was able to bond over the important concerns that are a part of everyone’s life with diabetes. And also over things that aren’t necessarily basals and boluses, but issues that still affect our blood glucose and our continued dedication to our health just as much.

The truth is, I learned just as much as the attendees, because, as always, it was the attendees who drove the agenda. It was the attendees who shared their lives and bared their souls. It was the attendees who created that wonderful judgement-free space that made people comfortable enough to speak their conscience and listen with an open heart.

Christel is fond of saying that the people in the room at the Diabetes UnConference are the people who should be in the room. I came away with a new appreciation for that notion because our mix of alumni and newbies made this particular gathering noteworthy and unique. You know, like they always do.

There will be a lot of different takeaways after this UnConference. Some people will make changes to their daily routine, or text a new friend they met this weekend now and then to make sure they’re okay. Some will embark on new advocacy measures. Some will try a new device, or drop an existing one. Some will work to help those who don’t have access to the same privileges they enjoy. Some will just cut themselves a little more slack now and then. Some will begin an entirely new level of conversation with their loved one. I am so encouraged to think about their ideas and the successes they will create.

I come to each UnConference eager to help people to feel welcomed, valued, and respected. I leave each UnConference feeling appreciated, honored, and humbled. There is a lot of giving and getting, but I always seem to be one of the lucky ones who receives more than I could ever repay.

The next Diabetes UnConference will be in Alexandria, Virginia October 13, 14, and 15. If you need a place to talk about your diabetes, or your relationship to your loved one’s diabetes, in a unique setting that makes the voice of the participant the center of attention, I encourage you to go to DiabetesUnConference.com and clear your schedule in the middle of October. Find out what I’ve found out: diabetes may not get easier, but life definitely gets better when you #FindYourTribe.

The Diabetes UnConference experience.

Over the past two years, many people have questioned me about the Diabetes UnConference. What happens? How do you decide what to talk about? What do you mean, “meaningful connections”? And what’s that no-social-media thing all about? I’ll tell you, in the past two weeks, I even had someone call me out on Twitter over that last one.

So, from start to finish, let me walk you through what a participant experiences when they sign up to attend the Diabetes UnConference.
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To begin with… when you sign up, you’re on the list. That’s my term. But whatever term you might use, you are on the list. You’re added to the list of attendees who will receive e-mails about what to expect when you arrive. What the meeting rooms are like (they’re often a little cold). What meals are part of the UnConference schedule. Timing of the different events.

You’re also on the list receiving the survey. The important survey where you list the things you really want to talk about on UnConference weekend. Hey, we’re the experts in our diabetes. The UnConference idea centers around the attendees setting the agenda and sharing what they know, instead of another guy in a blue suit and red tie showing you his PowerPoint presentation. The survey results are compiled, and as much as possible, we try to include all the subjects important to the PWDs (People With Diabetes) and PLUs (People who Love Us) that will be joining us.

But you’re not on a list, or on an island, by yourself. You’re also added to the Diabetes UnConference Facebook group, the one that includes only the attendees and facilitators for your specific UnConference. This is where the bonding begins, where people start to get to know one another. Where the tribe begins to form. We begin with introductions and share stories well in advance of our weekend together.

Wow, we haven’t even gotten to the actual UnConference yet. Stay with me.

Registration begins on Friday afternoon. For the facilitators, it’s a chance to meet new attendees for the first time and answer any questions. For returning attendees, it’s a chance for smiles and hugs and a little catching up before our meet and greet on Friday evening.

At the meet and greet, attendees are finally in the same space all together for the first time. Old friendships are made new again. New friendships begin to take hold. I usually hear a lot of comments like “Oooh, I like the color of your pump”, or “I make that too, but I do it gluten free and it’s delicious”, or “Where did you find that cute patch to go over your CGM sensor?”. All of that sets us up for Saturday and Sunday.

Saturday, we start to delve into the things that matter most to the people in attendance. Just a few topics are covered with everyone in the room. Mostly, PWDs gather to talk about what PWDs told us they wanted to talk about, and PLUs discuss things they shared via their survey. These are the moments that can be the funniest, the most raw, the most scary, and everything in between. And this is the reason for the no-social-media-during-the-sessions policy.

When people are sharing things that, in some cases, they have held close to their heart for many years, it would just be unfair to share that with the rest of the world via Twitter or Facebook. That is not why someone opens themselves up like that. They do it because they’re in a place where they feel protected, safe, without judgement. It is a protective cocoon where members of the tribe know there are no wrong questions. It’s a place where people can speak and know others are listening instead of reading another online news story on their phone. It’s where we feel respected. Where we feel valued as members of the tribe.

Often, at meals, in between sessions, and even during sessions sometimes, additional conversations are taking place in the hallways among people who connect even further on specific subjects that are more important to them than anything else going on anywhere else at that time. This is all part of those “meaningful connections” we often speak about.

Saturday night, the group gets together for a bit of a party or an outing as a group. After a day full of discussion on some heavy subjects, we need a little time to blow off some steam. So if you see posts of people letting go on Saturday night, this is why.

Once the last session is complete on Sunday, and people begin to head home, there are hugs and tearful goodbyes and contact information exchanged. There is a lot of hanging around and sharing one on one or two on two, etc. This can last for hours after. First-time attendees become alumni. Alumni look forward to continuing the conversation via the Diabetes UnConference Alumni group on Facebook, where alumni from all the UnConferences talk about their achievements, or vent about their frustrating day. Once the tribe forms, you’re part of the tribe forever.

You know, that’s a lot of stuff packed into just three days. Three days plus the time leading up to the UnConference, and the lifetime of friendships that come after. Still, a lot of stuff.

Yes, the Diabetes UnConference is unique. No, it’s not exclusive in any way. Yes, you will be welcomed as an equal whether diabetes has been a part of your life for 50 years or 50 days. It’s not always about “hey, I was able to lower my A1c”, though that happens sometimes. It’s more about knowing you are the expert in your diabetes, regardless of where your A1c sits at the moment. It’s about a shared experience with people who, if you let them, will be a part of your life for the rest of your life.

The Diabetes UnConference Las Vegas will be February 10 -12, 2017. To join the tribe, register here:
diabetesunconference.com/register

Full disclosure: I am part of the 2017 team of facilitators for the Diabetes UnConference.

The Diabetes UnConference Atlantic City.

Another Diabetes UnConference is in the books.
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This one was the first UnConference on the east coast of the USA. It will not be the last (more on that in a minute). Resorts Hotel and Casino was very kind for our few days along the New Jersey coast, and other than scorching late summer temperatures, the weather was great. Beautiful sunrises and sunsets.

What made the weekend really wonderful was the same thing that makes every UnConference special: the people.

There is something refreshing and honestly, for me anyway, necessary about getting together face-to-face with others who live with diabetes every day, discussing the things that are important and frustrating and funny and scary and sweet (no pun intended) about something that we understand better than anyone else: our own diabetes.

Each Person With Diabetes in attendance knows their life with diabetes better than anyone, and each attendee was able to convey their feelings and expertise on a variety of psychosocial aspects of living with this condition in a unique and respectful way. The format, along with our social media blackout during sessions, made for a safe place where everyone felt Welcomed, Valued, Respected, and Heard. Each Person who Loves Us (PLU— it’s a thing) in attendance was able to share, also in a comfortable, respectful, safe space, how it feels to share a life with a PWD.

As a facilitator in many of the sessions, I was once again humbled by the openness of people who have lived with diabetes for decades, and people who have lived with diabetes for just a few years. Many from the USA, and some from other countries, all seeking to understand themselves, each other, their jobs, their lives at home, and so much more. In the process, friendships were made, existing bonds were made stronger, and in one case, actual physical assistance made all the difference in a difficult moment. When the moment was over, it meant so much to be able to spend time with people who understand… people who get me. Priceless.

I think we all learned a lot. We certainly shared a lot. I think we all understand how important it is to:
#FindYourTribe

The next Diabetes UnConference will be at the Westin Las Vegas February 10, 11, and 12 next year. And I’m happy to report that The Diabetes UnConference will be coming back to the east coast in October of 2017. It will be in the Washington, DC suburb of Alexandria, Virginia. Details to come at a later date. If you’re looking for a little assistance to get to Vegas, the scholarship window is now open.

There is nothing like finding a safe, comfortable place to discuss the things that are most important to you. Especially when you live with diabetes, or you’re close to someone living with diabetes. Our pancreases don’t function properly. Our hearts are beautiful.
 

It’s about the people.

Like I mentioned before, last week was a very busy week. Part of that week meant being busy in a very pleasant place. Mixing work with pleasure? Okay, I’ll do that.

I spent last Wednesday, Thursday, and Friday working at the DPAC booth at the annual Children With Diabetes Friends for Life event. This is the mother of all diabetes gatherings, with thousands of People With Diabetes and their families descending upon Orlando for nearly an entire week. This was my first experience being there for more than just a day, and admittedly, my experience was not the typical conference-goer experience, but here are some things I experienced and noticed during my time there.
 
 
I arrived on Wednesday morning, about an hour or so after MasterLab began. MasterLab is a one day advocacy workshop presented by Diabetes Hands Foundation. There were a number of presentations, and I hope all of the attendees got a lot out of them, or at least were able to grab a nugget or two that they can use in their advocacy efforts in the future.

What I experienced: I saw many advocates from many countries who were very much into the focus of the day, which was to advocate for everyone living with diabetes. It’s sad to know that diabetes advocacy is needed elsewhere in the world, but good to know that there are stellar advocates living in Columbia, Mexico, Puerto Rico, the UK, and other countries.

What I noticed: Much of the talk was USA-specific, which risks alienating those attending from other countries, but I’m hoping this is a temporary “we’re learning how to do this” kind of thing.
 
 
Diabetes Patient Advocacy Coalition is a remarkable resource for people living with and affected by diabetes. We were able to garner many signatures for the Dexcom G5 labeling petition to the U.S. Food and Drug Administration, which will be holding a hearing on July 21 to discuss the issue. Our goal was to get 5,000 signatures on the petition. As of right now, we’re nearing 6,000. Yay Diabetes Community! The diabetes community was able to rally to this so quickly thanks to the fact that DPAC makes it so easy for someone to add their name and voice to the issues that mean the most to us. I urge you… take a hand in your own diabetes advocacy by going to diabetespac.org and signing a petition or sending an e-mail. We do best when we speak for ourselves. Tell your story. Tell it from the heart.

What I experienced: Despite being “on stage” (to use a Disney term) most of my time there, the exhibit hall was punctuated by bursts of activity before and in between conference sessions, then amazingly slow lulls once the sessions were, um, in session. I’m not sure how I did for DPAC, but I hope I did well, and I was happy and honored to do what I could.

What I noticed: There is still an overwhelming desire for knowledge among the diabetes community, especially its newest members. During my time manning the booth, I met a pair of first-time attendees, grandparents of a young person diagnosed not too long ago. As we discussed our diabetes lives (like you do), and they expressed some of their concerns, they must have seen the “everyone’s been through this phase” look on my face. One of them looked at me and said, “You’ve been living with this for 25 years… we want to know… tell us!“, as only a grandparent can express it. These two wanted to know everything about insulin, devices, burnout, you name it. They were in the right place that week to learn about all those things. And that’s not the only conversation I had like that while I was there. This is one of the many reasons why we need DPAC.
 
 
Finally… the one-on-one, human interactions with people are what make these gatherings special. I’ve said that many times after events like this, but it is an undeniable fact. The Diabetes Online Community has been vital in bringing together people from everywhere who have felt alone living with diabetes. Especially people like me. But the internet can only do so much. While my social media connections helped me crawl out of a depressive shell many years ago, the interpersonal connections have helped me stand tall, and build constructive and meaningful relationships that will hopefully last a lifetime. It’s that much more.
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What I experienced: The feeling that no matter how big my diabetes circle of friends is, there’s always room for more. It was great seeing existing friends like Karen and Bea and Scott and Mike, but it was also wonderful to finally meet Cara, and meet Tina, and meet Nia (who lives in my city!), and meet Becky, and Trip too. And almost instantly I want to hang out with these people, and advocate for them, and protect them. That feeling comes from actually meeting people and getting to know them at a level that few are capable of, because the one thing you have in common is the one thing that bonds you tightest to each other.

What I noticed: I was not the only one who noticed the absence of Medtronic at FFL. Every other pump manufacturer was there. Dexcom was there too. There are probably reasons for this which I’m not privy to, but many people noticed, and their speculation of why Medtronic was absent covered a broad spectrum of opinions. I’m not sure it matters why Med-T didn’t make it, and maybe it was okay that they weren’t there this year. But to use the word again, the absence of Medtronic allowed others to form their own opinions about products and corporate behavior, whether those opinions were accurate or not.
 
 
Because I spent most of my time working in the exhibit hall, I can’t say that I had a typical conference attendee experience. But because of these moments and others, I did have a typical, wonderful personal experience during my three-plus days in Orlando. Thanks to DHF for my invitation to MasterLab, and a special thank you to Diabetes Patient Advocacy Coalition, Christel Marchand Aprigliano and Bennet Dunlap, for the opportunity to put my mouth where my motivation is. Or something like that.

All of this reinforces the notion that it’s not about the disease, it’s about the people living with the disease. The idea that if you fall into a hole, someone will jump in to help you. Because they’ve been there before, and they know the way out. Our lives don’t get easier with our diabetes diagnosis. But knowing that others are walking the same stretch of road, right alongside us, makes us closer.

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