Tag Archives: Diabetes UnConference

Impact of The Diabetes UnConference.

March 25, 2015 – 8:28 am

I’m still processing The Diabetes UnConference.

It’s really hard to describe. At least to someone who was not in attendance. I’ve received a couple of inquiries about the event. Good inquiries, actually.

MLitchman
mpoulton

The problem is, the UnConference was not about one subject or another as much as it was about us, the people who were there, and our lives with diabetes, how we choose the devices we choose, how we navigate relationships involving diabetes, and that awful trifecta of guilt, depression, and burnout. And a LOT more.

What was said was not necessarily said for the benefit of educators, or healthcare professionals, or drug manufacturers, or even diabetes bloggers. Instead, what was shared was shared for the benefit of the people in attendance. As much as it makes me cringe when I say it, in this case, you really had to be there to fully feel the depth of our discussions.

That’s not to say that there won’t be any visible initiatives to come from the UnConference. There may very well be advocacy jumpstarted, or increased diabetes volunteerism due to some of the issues that were discussed. I certainly hope so. But it may come from individuals, or a team of individuals, rather than from the UnConference saying “here’s what we decided to do”. I have an idea in my head that came from the Aging with Diabetes session. I don’t know if I can do something with it, but I would like to try.

I also think that many of the things that were talked about will eventually make their way out beyond the confines of our walls at The Flamingo hotel. It just won’t be via Tweets and Facebook and blogs and so on. It’s going to be person to person, peer to peer, PWD to PWD. The conversations, however sacred, are not over. In many cases, they are just beginning. I like to think we cracked open quite a few cans of worms at the Diabetes UnConference.

When I consider bonds that were solidified over that weekend, and I look at Facebook posts and read blogs in recap of our time in Las Vegas, I’m finding that I wasn’t the only person who was moved by what I heard and experienced. And I’m not the only one having trouble describing it in a way that someone who was not there would understand and grasp hold of completely.

That’s kind of frustrating in a way. Except that the thing that makes it frustrating is also what made it so great—no social media during the sessions, keeping what was shared within the confines of the UnConference rooms, making it safe to open up, and ensuring everyone was listening.

That’s a tradeoff that this patient, anyway, is happy to make for the benefit of my fellow People With Diabetes who were there, and for the feeding of my soul that surprisingly happened during this special time in my life. I’m generally far too jaded to really get emotional anymore. I still feel things deeply, but I’m much more likely to keep my feelings to myself until the moment passes. That’s another thing I really had a hard time with, and I found myself opening up far more than I tend to do at traditional conferences.

Here’s the thing: Closing one window (social media) allowed another window (self fulfillment, enlightenment, relationship building, keep adding to the list) to open wide. Not just for me, but for everyone there. When I think of that weekend, I’m still a little raw. But I’m also ready and willing to listen to the next Person With Diabetes who needs a little more care and feeding of their soul.

My guess is that the impact of the first ever Diabetes UnConference will be both immediate and long-lasting. You’ve been reading about the immediate impact now, and the benefits of that are mostly internal. The long-lasting impact will be written about in years to come, and calculated in how one person makes an impact on another person’s life.

I’m still processing all of this, and I’m sure some of the attendees still are too. The conversations are just beginning. Lives are just starting to be changed. And that makes me feel like the UnConference will never really be over at all. I like the idea of that very much.

Unless, of course, there’s a cure. Then I’m okay with it ending. Just so you know…

By StephenS | Posted in Events | Also tagged , , | Comments (12)

Diabetes Unconference: What is your area of expertise?

March 16, 2015 – 2:17 pm

image
The very first Diabetes UnConference is now over. It was held at the Flamingo Hotel on the Las Vegas strip, in the shadow of the already-famous High Roller.

How to describe the UnConference? Well, I can’t tell you much about what was discussed in our sessions Saturday and Sunday. That’s because all attendees observed a strict no-social-media policy from our meeting area throughout the weekend. So I’m not here to give you a blow by blow rundown of what was presented.

Now that that disclosure is out of the way, let me back up a bit. Let me tell you about what the Diabetes UnConference was.

It was a place where adults living with diabetes, of all types, from all backgrounds, were engaging with each other in a safe, protective environment, rather than sitting in their chairs and looking up at someone’s PowerPoint presentation. It was an absolutely judgement-free zone 24 hours a day.

Instead, the experts at this conference were the attendees. Their presentations were on a number of subjects and drew on the collective experience of nearly 2,000 years of living with this chronic condition.

There was laughing and crying, there was criticism and praise, and there was support and a lot of listening to each other.

There was not always agreement. There was always respect. There were diabetes veterans meeting the newly or relatively newly diagnosed. There were tips and tricks exchanged.

People shared some of their most closely held fears and secrets. People emerged stronger. People emerged not feeling so alone. People were empowered to take another look at diabetes and their friends who live with diabetes, making a collective investment in a better future for all of us. We are all in.

In the end, I can tell you how I’m feeling a day after the conclusion of this event. Thanks to the people in the photo above, my heart is soaring today, without the help of anything but insulin and the support, understanding, and empowerment provided by my fellow compatriots.

And I would be honored if you brought your expertise to the UnConference next year.

Aboard the High Roller, 500 feet above the Las Vegas strip

Aboard the High Roller, 500 feet above the Las Vegas strip

No disclosure to see here, folks. I paid for conference registration and for travel to and from Las Vegas all on my own. And I’m damn glad I did.
 
 
 

By StephenS | Posted in Events | Also tagged , | Comments (22)

UnConference Scholarships: This is your last chance to apply.

September 30, 2014 – 9:01 am

Here’s your final reminder: Applications for scholarship opportunities to attend the Diabetes UnConference can be submitted through today.
 
 
Christel Marchand Aprigliano of ThePerfectD dreamed up this conference where diabetes peers of all types, from all over, will get together and actually set the agenda in the first hour of the conference. Actual adults living with diabetes will be asking and answering questions all throughout the weekend. There will be tons of information gathering, support, and encouragement from Friday, March 13 through Sunday, March 15 of next year. I don’t know if anything like this has been done before, and I’m pretty excited about it.
 
 
The best part is, you (yes, you) have an opportunity to get a scholarship that will pay for your travel and accommodations at the Flamingo Las Vegas, and pay for your registration to the conference too. There are scholarships for Type 1, Type 2, a Medicare recipient, and room scholarships that will pay for your hotel only. The application process is simple, quick, and easy. Have you been wanting to attend a diabetes event but haven’t had the space in your budget to fit it in? Here’s your chance… but only if you get your application in today. Click on this link and get started:
http://diabetesunconference.com/scholarships-for-the-diabetes-unconference-2015/
 
 
Scholarships were made available through sponsors of the event and The Diabetes Collective, Inc., a Florida not-for-profit corporation. I have no affiliation with the sponsors or The Diabetes Collective, Inc., and I am not being compensated in any way for talking about this here. I just want you to be able to be there next March!
 
 
If you’d really like to attend a diabetes conference by People With Diabetes, for People With Diabetes, this just might be for you. Find out more about the Diabetes UnConference and register by going to:
diabetesunconference.com
 
 
 

By StephenS | Posted in Events | Also tagged , | Comments (0)

Like these links, and keep the D-mojo going.

August 6, 2014 – 8:48 am

Welcome to Wednesday…

I’m going to throw a few links at you today to help you keep your diabetes mojo going strong. I promise: If you click on any of the links below, your requirements in terms of time and effort will be a scant two or three minutes apiece. Quicker if you read fast. Check them out:

You may remember me writing about a U.S. House of Representatives resolution (HR 3710—Medicare CGM Coverage Act) introduced last year. Well, now a bill to get continuous glucose monitors (CGMs) covered by Medicare is making its way through committee in the United States Senate. This one is Senate Bill 2689—Medicare CGM Access Act of 2014. Introduced by Senate Diabetes Caucus co-chairs Susan Collins (R-ME) and Jeanne Shaheen (D-NH), this bill aims to do the same thing: Protect the right of citizens on Medicare to keep their CGM. Make sure you get your senator to get behind this legislation, like, NOW. JDRF makes it easy by providing this link:
https://secure3.convio.net/jdrf3/site/Advocacy?cmd=display&page=UserAction&id=412

Just fill out the form, include your own personal sentiments (like, “I’m going to be Medicare eligible in 13 years… Don’t take away my CGM when I need it most!”). Click Send Now and you’ll have committed an act of Diabetes Advocacy before Starbucks can serve up your latte.

Got an extra minute? There’s also a petition to sign:
http://www.thepetitionsite.com/takeaction/776/978/446/

————————————————————————————

Also: The U.S. Food and Drug Administration has proposed new guidance for Medical Device Data Systems (MDDS). Borrowing from the Strip Safely website:

“These are systems that, in the FDA’s words, facilitate “the electronic transfer or exchange of medical device data from a medical device, without altering the function or parameters of any connected devices.” Translation: technology that lets data show up on a device other than the medical device itself. FDA believes that these types of MDDS introduce little additional risk, and the agency is therefore proposing to lessen the regulatory process for MDDS.”

Face it: We would all like to have access, and provide access for our loved ones, to the data from our devices. This is possible, it’s helpful, it’s an idea whose time has come. Agree? Now’s your opportunity to have your voice heard. How do I know they’ll listen? I was contacted by the FDA about comments I posted earlier last year on glucose meter accuracy and post-market inspection.

You only have until August 25 to submit your thoughts. Get the skinny right here:
http://www.stripsafely.com/sample-page/comment-on-mdds/

————————————————————————————

Finally… Just in case you forgot about it, don’t forget about the first Diabetes UnConference, taking place out in Las Vegas next March. Brainchild of Christel Marchand Aprigliano of ThePerfectD, it will be a conference of diabetes peers from all over, setting the agenda together in the first hour, and asking and answering questions throughout the weekend. I already have four ideas, at least one of which may have some merit. If you’d really like to attend a diabetes conference by People With Diabetes, for People With Diabetes, this might be for you. I understand rooms are filling up fast. This is really turning into a thing. Find out more about the Diabetes UnConference and register too by going to:
diabetesunconference.com

————————————————————————————

So… what about you? Have you read or written anything lately that is awesome? Oh… I just remembered: Kelley at Below Seven just published this month’s list of Best of the ‘Betes blog posts yesterday. Now… Where was I? Oh yes… If there’s something that moved you recently, please be sure to leave a link to it below. I’d love to read it!
 
 
 

By StephenS | Posted in Like these links | Also tagged , , , , , | Comments (1)