Category Archives: Events

Sign up for these public meetings.

Hello…. I hope everyone’s week has been grand. For me, life has been a series of meetings and appointments and lots of work. While I have a moment, I want to let you know about two upcoming meetings that offer both educational and advocacy opportunities.

On April 26 and 27, there will be a meeting at the offices of the National Institutes of Health in Rockville, Maryland. The National Institute of Diabetes and Digestive Kidney Diseases (NIDDK) is chairing an interagency coordinating committee meeting where, in this case, they will be talking about prioritizing Type 1 diabetes research.

Like so many meetings, this one is open to the public. There will not be an opportunity to make public comments in person, but there is a way to e-mail your concerns ahead of time. Then, if you are able, you can go to the meeting and be the eyes and ears of the community, so to speak. We need that sort of thing in these forums.

To find out more, and to register, CLICK HERE.

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On May 12, there will be another public workshop at the U.S. Food and Drug Administration. This one is specifically advocacy-based. In this workshop, attendees will get direct input from FDA staff on the roadmap for approval of new drug therapies. You’ll get tips on how to make your voice heard in the approval process. And you’ll get additional information on how FDA uses the patient voice to help make informed decisions, while protecting patient safety.

This is a great opportunity to learn how the sausage is made. Metaphors! I’m full of metaphors today!

The workshop takes place at the FDA’s sprawling White Oak campus in Silver Spring, Maryland on Friday, May 12. To find out more, and to register, CLICK HERE.
 
 
That’s what’s happening near where I am… what’s going on in your part of the world?

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.
 

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