More Diabetes UnConference News, and FDA doings too.

I know I’ve written a lot about The Diabetes UnConference, but I need to share this bit of exciting news:

First: There will be another Diabetes UnConference in Las Vegas next year!
Details are still being worked out, but it will be in Las Vegas, and it will be in March 2016. For me, this is very encouraging. There were many people from the western part of the USA who attended this year, and I know at least a couple would not have made the trip had it not been so close. So I’m glad that adults living with diabetes in Nevada, Arizona, California, Utah, and other western states will have something relatively close to go to. But that’s not all….

Second: There will be an East Coast version of the Diabetes UnConference in the Fall of 2016!
Again, it’s still in the planning stages, and there isn’t much to tell yet, but for all of you who can’t quite make the trip to Vegas next year, know that there will be an East Coast UnConference in the fall. More to come on that development. But wait… that’s not all…

Third: Both editions of the 2016 Diabetes UnConference will include separate “Adult T3/People without Diabetes” sessions! Some parts of the UnConference will offer opportunities for both People With Diabetes and People Without Diabetes to interact, but there will also be a separate space and special sessions so People Without Diabetes can experience the UnConference too, sharing among their tribe, peer-to-peer (still adults only).

Hard to imagine next year already, but it already looks like it will be great.

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Advocacy Opportunities:

The U.S. Food and Drug Administration (FDA) is holding a couple of public meetings in April.

The first, on April 14, is a meeting of the Endocrinologic and Metabolic Advisory Committee, which will go over outcomes of research on patients using the Type 2 medications Saxagliptin and Alogliptin. The public is welcome to attend, but you must register. To do that, and to get all of the information on this Advisory Committee meeting, CLICK HERE.

Also, one week later on April 21, there will be a public workshop titled “An Interactive Discussion on the Clinical Considerations of Risk in the Postmarket Environment”. This workshop is really a forum to discuss possible risks (or not risks) of devices after they’ve been approved by the FDA. This is not specifically diabetes related, but hey, we wear devices, right? There is also an opportunity for patients (that’s me) to submit comments, and even speak at this public workshop. Looks very interesting to me. Want to attend? CLICK HERE.
 
 
There you have it. Exciting doings in the diabetes world, both in the near future, and next year. Enjoy your weekend!
 
 
 

Impact of The Diabetes UnConference.

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…

This Champion Athlete With Diabetes is a real life Champion.

When I started to write up the information on our newest Champion Athlete With Diabetes, I found myself saying, “Is there anything that Alex Carlson can’t do?”.

ACarlson
Alexandra Carlson lives in Minnesota, so it makes sense that her sport is a winter one. In fact, she’s part of the 2015 USA Curling National Champion team. She trains a great deal in able to be in top form for her sport. Curling requires Alex to be strong, agile, and fit.

How do I know she is all of these things? Because I read her blog, Test Travel Train. There, she talks about the things that make her unique (testing, traveling, and training… duh), and how living with Type 1 diabetes for over twenty years is a part of that.

It’s part of her life, but it doesn’t seem to be slowing her down. And that is, um, AWESOME!

You can read all about winning the National Championship HERE.
CurlingChamps
So, to recap: Training to compete at the highest level of her sport, writing a super blog, and managing diabetes for 20+ years. And she has a new pump too!

Congratulations, Alex. You are exactly what inspires people living with diabetes to go out and chase their athletic dreams.
 
 
Want to have your own Champion Athletes With Diabetes medal minted? Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal.

Keep it tuned right here, friends. I’ve got two more Champion Athletes to tell you about in the very near future.
 
 
 

Trust but verify.

There is a dance that we do.

The dance begins when I start packing. We’re not exactly walking on eggshells; we’ve been together too long for that. It’s more that kind of thing where one person doesn’t want to think about the fact that we’ll be apart, and the other doesn’t want to admit it.

The dance continues, almost uninterrupted, until I’m safely at my destination. Then the music almost stops for a while. As long as I’m in constant communication. As plans are made for my return, the dance turns into an almost giddy jitterbug that crescendos upon my arrival at home.

Then, as the dance begins to wane, there is a little more uneasiness. An almost tacit understanding that the descriptions of my experiences are expected and welcomed, as long as it doesn’t include certain subjects.

This is how it works with us after 21 years of marriage and 24 years of living with my diabetes. Worry that something will go wrong while I’m gone, and she won’t be there to help me. Concern that I’m enjoying myself, and also taking care of myself at the same time. Crazy as it seems, sometimes I need to be reminded that my health comes first. And her knowledge that I’ve made my health a priority is a very, very close second. In that regard, the term “détente” comes to mind:

Trust but verify.

This is a dance that goes on whenever I leave, for however long I’m gone, and a little after I’m back, whether I’m just going to the office for the day or going to another continent. The dance takes several forms, and often ends in frank discussions about how both of us feel about my diabetes and how it affects our relationship and our daily lives.

Trust but verify.

The dance changes, but the dance continues. I suspect it will continue for a long time. Because as the dance continues, our lives change. Our relationship changes. My hope is that it will grow stronger, but that I will also learn more about the concerns that are part of her world and make her the partner, the cheerleader, she is.

After all, who doesn’t want to be a better dancer?
 
 
 

Now is the time– Make an impact.

I have one piece of semi-big news for Type 2s today, and one very big reminder for Type Anythings…

First: Abbot Diabetes Care is going ahead with clinical trials of its Freestyle Libre system. Already available to People With Diabetes in Europe, it promises glucose monitoring without performing fingersticks. That’s a potential game changer for many PWDs. But there’s a lot more to it than that. For a super write-up on the Libre, check out this review from diaTribe.

Now Type 2s have the opportunity to take part in 14 day clinical trials of this device. Trials will be held in California, Michigan, Missouri, North Carolina, and Texas. So there might be one near you.

I’ve written many times about the importance of clinical trials, and the importance of your participation in trials. So consider taking part in this trial and helping to advance device options for others living with diabetes in the USA. For all the lowdown on the trials, CLICK HERE.

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Diabetes Hands Foundation and Diabetes Advocates sponsor MasterLab, the (now) two-day diabetes advocacy workshop happening July 7 and 8 at the Friends For Life conference in Orlando. DHF and DA are offering 19 scholarships to participants who are looking to get their advocacy on by attending this event. Scholarships include airfare to and from Orlando, hotel accommodations, and other considerations. I received a scholarship to attend MasterLab last year, and it made a huge impact on me. What I learned there helped me tremendously when I spoke at an FDA workshop later in the year.

This year I won’t be asking for a scholarship. So you already have one less competitor! But you must apply by April 3. To find out more about MasterLab and other scholarships available through Diabetes Hands Foundation, CLICK HERE. NOW.

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Very exciting stuff folks. I’m looking forward to hearing more about the Libre clinical trials and MasterLab from some of you. Please let me know if you take part, and what it does for you. Good luck!
 
 
 

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