Tag Archives: Diabetes UnConference

Just one step.

I read with great interest this well-written article from Chelcie Rice that was featured over at Insulin Nation recently. Christopher Snider and his sister Jeanette talked about the post and the subject on their podcast, Mark All That Apply. I think both are worthy of attention, and for what it’s worth, both have me thinking about this subject again.

As I mentioned to Chelcie after he linked to his story on Facebook, I think about the lack of diversity every time I attend a diabetes event. It’s not that there is a lack of color at events; often, there is no color at all. Even though we all know that people of color are disproportionately affected by diabetes. It’s something that’s entirely different from the ethnic makeup in every other part of my life.

But hey, I’m an advocate… but wait, I can’t change my ethnicity… so what should I really do if no one shows up who doesn’t look like me? I’m not sure exactly what I should do. But I know what I can do.

I will promise to provide one scholarship to this October’s Diabetes UnConference to a person of color. I will promise to pay for registration to this event in Alexandria, Virginia.

This will only include the price of registration. I’m not rich enough to include travel, so that will not be included. I can’t guarantee much else either. But hopefully, this is something, and hopefully it will get someone to consider applying for the scholarship who up to now has been on the fence about attending a diabetes event.

Why am I doing this? Because I’m altruistic and wonderful? It’s a little more complex than that.

The truth is, every single time I’m at a conference or research summit, I notice the lack of diversity in the room, and I think about it. This past Friday’s Outcomes Beyond A1c meeting (more on that later in the week) was an exception, but most of the diversity in the room came from outside the USA. To this point, I haven’t done anything about what I’ve seen.

I’m also well aware that this won’t exactly solve the issue of diabetes meetings, conferences, etc. that are not as diverse as they could be. I mean, it’s not like people of color have been excluded from the events I’ve attended. And where there has been diversity, it appears to me that people have been welcoming.

But by and large, diabetes conferences and other events still look different from the way the rest of my world looks. And if doing this one, small thing helps to begin to change that, if it begins to help communities that have been underrepresented, I’m comfortable with my decision.

There are powerful leaders among us, and it would be ludicrous to think that they are all white. As I’m fond of saying, we need all the advocates we can get. Frankly, I don’t care what they look like. And while I can’t speak for them, I suspect that the white friends I have in the diabetes community feel the same way.

Likewise, there are many in need of support and empowerment in the diabetes community, and I have to believe the needs I see among those who look like me are at least matched by those who do not look like me. And if they’re in need, frankly, I don’t care what they look like.

I haven’t thought very hard about rules for this little effort. But for starters, here’s what I’m looking for:

– You need to be a person of color (loosely defined; in other words, you don’t look like me)

– Since this is for the Diabetes UnConference, you must be an adult living with diabetes, or an adult close to someone living with diabetes of any type

– You need to want to use your opportunity to help others… paying it forward is part of the plan

We’ll make up the rest as we go along.

If you’re interested, send me an e-mail using the E-Mail Stephen link in the upper left part of this page. On August 14, I will pick a winner from among those responding. Be ready for follow-up questions. I don’t want to make it difficult for you, but I do want to make sure you can make it, and I want to make sure this event is a good fit for you.

One more ask: Please share this with others you know in the diabetes community. I would be thrilled to have to choose from a number of applicants.

Finally, this is not all there is. If we think about it, probably all of us, no matter what we look like, can figure out a way to help make diabetes events look more like the rest of the communities we live in. I’m hoping I can provide scholarships in the future. Not sure if I can, but that’s the goal. But that’s not all I can do. Whether it’s through communicating with additional diabetes groups, or through a donation, or through continuing to be a welcoming presence wherever we are, I know you and I can help make diversity a part of the diabetes advocacy we all believe in.

We all want to reduce the burden of diabetes on everyone living with this disease. This is just one small step. A symbolic step perhaps, but it’s what I can do.
Now, let me ask: What can you do?

Now, more than ever.

I wonder sometimes if I haven’t changed over the last several months.

These are tough times here where I live, and it seems like many of the things I believe in, the things I was taught in school, don’t really apply to today’s America. Or maybe this is the America that was here all along, but it’s just showing itself in a more public way. I realize just reading that can inspire different interpretations based on your political leanings, but this is not about that.

Regardless of how you look at things, there seems to be a lot to worry about.

I’m getting older… there’s that. And, of course, health care is multi-faceted and multi-argued, and it probably will be for the foreseeable future. Where I can, I’m trying to be a better friend, a better colleague, a better person overall. However, in some ways, I fear I’ve become a less happy person at times.

Let’s face it… I think we’re all feeling a little more stressed out these days.

That’s why this community, this diabetes community, is so important.

Photo courtesy of The Diabetes Collective, Inc.


That photo is from the second Diabetes UnConference. There are a number of friendships that begin on UnConference weekend that continue far beyond the event itself. Friendships that stick to you. Friendships that restore your faith in people. Friendships that make the time apart from each other seem interminable, and the time spent with each other flash by in a nanosecond.

Whether it’s virtually, or over brunch like it was this past weekend, being able to communicate with others who walk the same stretch of road you walk can have a huge, positive impact. There’s something about the feeling you get knowing that you belong, not because you’re famous or independently wealthy or part of another special group… but because you’re stuck with a condition that no one wants. And someone else is too.

It’s the feeling that amazingly, something about this crappy disease is worth celebrating.

Photo courtesy of Rhonda B.


Does this mean we’re not going to experience problems? Of course we are. Life doesn’t go away just because we get to spend a couple hours in the presence of friends.

But those two hours certainly make those problems a little more bearable.

I think that’s the point. Even when we’re up against deadlines and doctor appointments; projects and finger pricks; goals and glucose issues, we have our friends to lean on, who understand, and just help us forget about the drag of diabetes for a while.

Now, more than ever, we all need friends who remind us that there’s more to life than the next big thing to complain about. If you don’t have one, I encourage you to find one or more friends, virtually or in person, who will accept you for the contribution to community that you truly are or wish to be.

Looking to make new friends? Want to talk about diabetes in a safe, supportive atmosphere? The Diabetes UnConference is coming to Northern Virginia October 13 – 15, 2017. This fall, the UnConference is being co-hosted along with the Diabetes Sisters Weekend for Women. Two chances to make new friends! To learn more, and to start the process of making new friends in the diabetes community, CLICK HERE.

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.

Diabetes By The Numbers (Part 1): Christel Marchand Aprigliano talks about the Diabetes UnConference.

I can’t tell you how excited I am to finally share a conversation with Christel Marchand Aprigliano. In three parts.

Christel, as I mention in the introduction, is a force in the diabetes world. Until there isn’t a diabetes world any longer, we can only hope to have advocates like her who get in the trenches and fight for the things that are important to those of us living with this disease.

In part two of our conversation, you’ll hear about one of the hot topics of the day, insulin pricing, where roles are slightly reversed, and I’m the feisty one. Part three will cover Diabetes Patient Advocacy Coalition, and how using the easy button can help you get your diabetes advocacy started, and up your diabetes advocacy, all in less than two minutes. Those episodes are still to come, and you’re not going to want to miss them.

Today, we talk about the unique gathering known as the Diabetes UnConference. Christel covers all the things that make the UnConference life-affirming. We discuss the No Social Media policy that exists during the sessions on Saturday and Sunday, and why that is so important to attendees. And Christel admits that her intentions in creating the UnConference were not entirely altruistic (her words, not mine). She needs it just as much as the rest of us.

If you’re in a place in your walk with diabetes where you could use some space to vent, or learn, share, and meet new friends, whether diabetes has been in your life for days, weeks, months, or years, this is the podcast episode you’ve been waiting to hear.

Full disclosure: I will be a facilitator at the Diabetes UnConference in both locations this year. I am not compensated in any way for this interview, except in the good vibes that come with going one on one with a person whom you admire and trust and learn from at every turn.

DBTN

Reference Material – Click below for more information on this topic

Christel Marchand Aprigliano writes about life with diabetes at:
theperfectd.com

Find out everything about the Diabetes UnConference (and read experiences from attendees too), by going to:
DiabetesUnConference.com

The Diabetes UnConference will be held February 10, 11, and 12 at the Westin Las Vegas. Register by January 24 by going to:
DiabetesUnConference.com/register

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.
Un
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.

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