Tag Archives: Events

#HealtheVoices15: We are not alone.

April 21, 2015 – 9:37 am

April 17 through April 19, I attended the HealtheVoices Conference in Jersey City, New Jersey. Janssen Pharmaceuticals paid for my train travel, hotel, and meals so I could take part in this gathering. In case you’re wondering, all opinions expressed here, or using the #HealtheVoices15 hashtag are entirely my own.
HealtheVoicesConference
I spent last weekend at something called the HealtheVoices conference in Jersey City. Unlike all of the diabetes conferences I’ve attended in the past three years, this conference brought in people living with a host of different chronic conditions.

And you know what? I discovered we are not alone.

Okay… sure… I knew that People With Diabetes are not the only ones living with a chronic condition. But when you get immersed in a cause, after a while, you tend to forget about the others who are out there working on different causes, lifting up others living with a different disease. One of the really cool things about this weekend was the opportunity to see and hear from people living with and advocating for those living with Chron’s disease, HIV, Rheumatoid Arthritis, Cardiovascular issues, Breast Cancer, Prostate Cancer, and so much more.

The presentations were well thought out and well presented. I liked learning how people are making a mark in their own patient communities. There were also presentations where we learned about the legal ins and outs of writing a blog, how to take an idea and get it funded, and the importance of telling our stories online and engaging with others to create a better community.

And just like the diabetes conferences, there was real value in the one-to-one, peer-to-peer conversations that happened over breakfast, lunch, dinner, and between sessions. Some of the best ideas I heard, and some of the most inspiring things I witnessed, came in those quiet moments where someone was able to share what they’ve experienced and what they’ve learned with a bigger audience. I got to watch groups from other conditions gather and share and laugh together, just like PWDs do. I found that the power of “me too” isn’t exclusive to diabetes.

So by now, you may be asking: What about the diabetes people in attendance? Well, let me tell you… the diabetes team absolutely rocked it this weekend.
BlueFridaysCheriseKarenKim
Cherise, Karen, Kim, and also Christel and Kerri (who also presented and was on the advisory panel for this conference) were sponges who spent equal time gathering information, listening to others, and sharing their stories and tips with others. They were tweeting like crazy and asking questions and engaging in conversation. One of the other things I learned about this weekend is that we’ve accomplished an awful lot all on our own.

I should also take a moment to thank the people at Janssen who gave up their weekend for this event. Thanks especially to Rachel Yurchak and Caroline Pavis, and to the people whose last names I don’t remember, like Stephanie and Beth. You made us all feel welcomed and important.

I’d like to think I’ve met a few people that I’m proud to say are friends now. I’d also like to think that I’ve found a few new things to aid me in my advocacy efforts.

Listen… My diabetes community bubble is good. It helps me when I’m down, it inspires me to perform advocacy, it has changed my life in a positive way forever. The great thing about the HealtheVoices Conference was that I could see, and learn from, additional communities that are doing the same thing, with people who are just as inspiring, and who encourage me to do better and be better. I will never forget their stories.
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (8)

Heading out again.

April 17, 2015 – 8:46 am

As the sun begins to break through again (thank you rain, but thank you sun!), I’m all packed and ready to head off to something called the HealtheVoices conference in Jersey City… wait for it… New Jersey.  It’s just across the Hudson river from Manhattan.

This is not just a diabetes conference– there will be a number of online patient advocates in attendance who are dealing with a myriad of medical conditions, including HIV, breast cancer, cardiovascular issues, Chron’s/colitis, and many others.  I’m very interested in getting ideas and perspective from people living with and affected by conditions that are not my own.

The conference has been put together by Janssen Pharmaceuticals, which, among other things, produces the Type 2 medication Invokana.

This is where I tell you that Janssen Pharmaceuticals is paying for my train travel, hotel, and meals so I can take part in this gathering.  In case you’re wondering, all opinions expressed here, or using the #HealtheVoices15 hashtag are entirely my own.

This is the first time a company has invited me, at their expense, to attend a conference.  Guess I should think about creating that disclosures page now.

If I can, I’ll let you know what’s happening when it’s happening. Otherwise, I’ll try to give you a recap later on.

I hope your weekend is off to a great start, and I hope the nasty weather stays away from your part of the world too. Talk to you Monday!
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (6)

More Diabetes UnConference News, and FDA doings too.

March 27, 2015 – 9:38 am

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!
 
 
 

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

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)

JDRF TypeOneNation DC Research Summit. Where else?

March 12, 2015 – 9:12 am

Last Saturday, people from the USA’s Mid-Atlantic region living with and affected by Type 1 Diabetes gathered for another TypeOneNation Research Summit in Bethesda, Maryland, just outside Washington, D.C.

This was my third DC summit, and usually I go over all the presentations in great detail, trying to pass along the information I gathered on a wide variety of topics over the course of about seven hours.

Instead of doing that again, I think I’d like to ask you a few questions. These questions are especially for those of you with TypeOneNation summits coming up in your area soon, but also for those who may have skipped this year’s DC summit and want to know what it was like. So… Let me ask you:

Where else would you get expert advice and a chance to ask questions about diabetes and exercise, and the best way to handle both, from the amazing Gary Scheiner, author of “Think Like a Pancreas”?

Where else could you find out the latest on beta cell encapsulation, including updates on clinical trials and photos of the procedure actually being done?

Where else could you find out the science behind Emotions and Diabetes from the insightful Diane Herbert?

Where else can you get all of the above and an update on the latest in Artificial Pancreas development from the excellent (and humorous) Dr. William Tambourlane?

Where else can you discover what’s on the T1D research horizon from JDRF’s National Director of Research Investment Opportunities, Tom Brobson?

Where else can you get all of this plus additional sessions, plus a great panel Q and A session with all of the presenters, moderated by the incredibly intelligent Molly McElwee Malloy?

Where else can you bring your T1 kid to share in a safe, fun environment with other T1 kids?

Where else can you meet other adults living with Type 1 Diabetes, who help share information, write blogs, and share tweets from the presentation with the world?

imageWith Heidi, writer at D Log Cabin, who will also be with us this weekend in Las Vegas for the Diabetes Unconference(!), and Jehan, who tweets from @gigi_tweets2.
 
 
Jenni_JDRFWith Jenni Maizel, who was tweeting from her own account and handling the @JDRFGreaterCP account too.
 
 
This is just a sample of what you get when you go to a TypeOneNation summit. I haven’t even mentioned the exhibit hall or the book signings. Personally, I was encouraged by the fact that there seemed to be a lot more adult T1Ds in the crowd of over 900 Saturday than there were in years past. There were also lots of D-Moms and D-Dads who are learning more than ever before, who were sharing with other D-Moms and D-Dads, and were also asking questions of Type 1 adults in attendance, who were sharing their experience. During this summit, there seemed to be as much interaction and information-sharing among the tables as there was on stage.

There are still TypeOneNation summits to be held in several places around the USA, including this Sunday at the Sharonville Convention Center, about five minutes from where I grew up in the Cincinnati area. CLICK HERE to find out where the remaining summits will be held and how to register (Free!).

Until there’s a cure, we have each other. Find out the latest on Type 1 Diabetes research, the latest in what JDRF is up to, and more, in a welcoming place full of people who are climbing the same mountain. If you haven’t made the commitment yet, let me urge you: GO.

Where else?
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (7)