Category Archives: Events

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 | Tagged , , | Comments (22)

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 | Tagged , , , | Comments (7)

Scholarships! Get your red hot scholarships!

January 20, 2015 – 12:29 pm

This past Wednesday’s DSMA Twitter Chat was all about travel and diabetes. Actually, it turned out that travel and diabetes was part of it, and travel for diabetes was another part of it.

Anyway, one of our questions was:

Are you aware that there are groups who offer scholarships to attend diabetes events?

I was shocked to find out that many were not aware of this fact. That doesn’t mean there’s something wrong with those people. Rather, it means we, as a community, need to do a better job of letting people know about said scholarships and we need to do a better job of supporting those organizations who do award scholarships.

Every time a semi-big diabetes event occurs, or someone writes about their child with diabetes going away to a camp or something, a lot of hand-wringing goes on about who is there, and why, or how, they got there in the first place. Well, we get there a number of ways (and I realize I’m using “we” with a very big umbrella here). Sometimes these things are geographically close to us. Or we actually, you know, save our money so we can afford to get there. Some events are invitation-only and travel is paid for those who attend. And yes, sometimes, we receive scholarships.

I can’t do anything about those first three things. But as far as the scholarships are concerned: I can let you know about them, and then it’s up to you to either apply for them or not. And if you have a desire to go, and you can’t quite fit it into your budget, why wouldn’t you apply?

This is my attempt to give you a rundown of the scholarship opportunities I know about right now. This is not a comprehensive list, but it’s a start, and if you know of additional resources, please leave a comment below or send me an e-mail and I’ll add them. Some of these are actual scholarships to college for kids with diabetes, and some are scholarships that will help you or your child attend a diabetes event that you might not otherwise be able to travel to.

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First, let me tell you about the amazing work of Diabetes Scholars. Since 2004, the non-profit Diabetes Scholars Foundation has provided scholarships for over 3,000 families to attend the big diabetes meetup of the year, Children With Diabetes Friends for Life conference in Orlando. Many of these families would not be able to go without the assistance of Diabetes Scholars. Diabetes Scholars also provides college scholarships to high school seniors looking to further their education. Get all the details on scholarship opportunities and the application process at
diabetesscholars.org.
 
 
Speaking of college, College Diabetes Network has a terrific list of college scholarships available throughout the USA. These are scholarships that are available from a number of sources, but this page contains a brief description of each scholarship opportunity and a link to its source:
https://collegediabetesnetwork.org/content/scholarships
 
 
Diabetes Hands Foundation and Diabetes Advocates: These two non-profit orgs (DA is a group of, well, diabetes advocates under the DHF umbrella) provide scholarships to a variety of D-conferences throughout the year, including the annual American Association of Diabetes Educators conference, American Diabetes Association’s Scientific Sessions, and Friends for Life. In addition, they created one day scholarships to attend MasterLab, a one-day advocacy workshop at FFL last year, and my guess is they will do the same this year (though I have no inside knowledge). To look into scholarship opportunities, start at
diabeteshandsfoundation.org.
Disclosure: I received a scholarship from Diabetes Advocates to attend MasterLab last year. More about that in a minute.
 
 
The American Diabetes Association, in addition to support received from corporate sponsors (thank you Eli Lilly), helps to provide “camperships” for kids to attend diabetes camps across America. The process is pretty simple, and it’s spelled out at
http://www.diabetes.org/in-my-community/diabetes-camp/financial-assistance.html
 
 
The always-inspiring Team Type 1 Foundation works to provide help, hope, and awesome examples of athletes with Type 1 diabetes making a positive influence on the world. They also provide college scholarships to Type 1 athletes competing at NCAA and NAIA institutions. Their scholarship page has all the information, including requirements:
http://teamtype1.org/gasp/

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That’s the list so far. I know there are many, many more scholarship opportunities out there, but I just haven’t found them yet. Again, if you know about something not mentioned here, leave me a comment or an e-mail, and I’ll add it to the list.

One other thing, and this is personal, so feel free to ignore the rest of this post: As I mentioned above, I received a scholarship to attend MasterLab last year. A couple of months later (or maybe I just noticed it a couple of months later), I read a few things about a person or persons who were unhappy, and felt like the same people are always getting to go to important diabetes events. Well, I felt horrible about that. This was the only thing I’ve ever been given (other than an invitation) to attend a diabetes event. But since then, I’ve wondered if, by accepting a scholarship to attend, I was denying someone else’s opportunity.

So this year, I’m not applying for any scholarships. If I can afford to go to something, I will. If I cannot, I won’t, and I won’t worry about it. This is my decision, and my decision alone, and I doubt it will have any real impact at all. After all, I’m not exactly giving up something I’ve already been granted. And I can’t say that I’ll always feel this way. Each year carries its own concerns and priorities, and I may go back and apply for scholarships in 2016. But for this year, if you want to apply for a scholarship, know that you have one less competitor.

That doesn’t mean I’ll be completely absent from everything this year. I get a lot out of going to diabetes events… I learn a lot, which is something I feel I need, and I can’t discount the interaction that goes on among people I can call friends now. But hopefully, those people are still my friends whether I’m there in person or not. And the fact is, I don’t really attend a lot in person anyway, and a lot has been done over the past couple of years to help get content online for people who aren’t able to attend something in person. In the end, I have an admitted desire to go to everything I can get to. But if I don’t make it this year, it’s not the end of the world.

You? You should go. Educate yourself. Meet people. Form bonds. Ramp up your advocacy. And if you need a little help to get there, always be on the lookout for scholarship opportunities.
 
 
 

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Like these links: College scholarships and the JDRF Research Summit.

January 16, 2015 – 9:49 am

I just have a couple of minutes on a very busy day, but I wanted to let you know about a couple of things that might be of interest. Hopefully, you’ve heard of these already, but if not, consider yourself informed.
 
 
This will matter most to people living in the USA’s Mid-Atlantic region, but these are being held all over the country this year. So if you’re not close enough to attend, look for a similar event in your area soon.

Registration is open for the JDRF Type One Nation DC Research Summit on March 7 in Bethesda, Maryland. Find out more about the summit in previous years by reading this and this.

Free to attend (a donation is suggested), the summit offers speakers on a variety of topics including the latest Type 1 research, JDRF’s continuing mission, how to manage your diabetes through exercise and stress, and much more. As in past years, there will also be a kid’s track and a teen track, so the young ones won’t be bored while all of the adult stuff is going on. In addition to that, there promises to be an exhibit hall full of the latest information and products. I’ll never forget how swamped the t:slim table was last year.

This year’s event will also include two optional morning workshops: One on managing diabetes through sports and exercise with Gary Scheiner, MS, CDE of Integrated Diabetes Services. He was last year’s AADE Diabetes Educator of the Year, and if you haven’t seen Gary do his thing, let me tell you… you don’t want to miss the valuable information he’ll provide.

The other morning workshop will be Taking T1D to School, featuring a panel of specialists who can help give you all you need on planning and preparing for each year as your kid works their way through the school system. Featured speaker for this workshop will be Sarah Butler, MS, RN, CDE, NCSN, Director of Diabetes and Nursing Education for the National Association of School Nurses. In other words, she probably knows her stuff.

The other thing I will say about this get together is the same thing I say every year: If you’ve had difficulty connecting with other people living with Type 1 diabetes, or other families living with T1D, this is the perfect place to solve that problem. Last year, over 800 people attended this event, so if you go, you’re bound to make new D-friends. It’s a laid back atmosphere, usually with plenty of room to stretch out, and everyone there speaks your language. Did I mention lunch is included too?

To get the skinny and register for the JDRF Type One Nation DC Research Summit, go to:
http://jdrfsummit.org
 
 
Diabetes Scholars is accepting applications right now for scholarships! They currently have 11 scholarships to give away to high school seniors planning to attend a four year college, university, technical, or trade school. Some of these scholarships are for as much as five thousand dollars, so if you’re planning to go off to college (or your young adult at home is), now is the time to apply.

To be eligible, you must be a high school senior living with Type 1 diabetes, and a U.S. citizen or permanent resident. Applications will be accepted until April 15, so warm up your typing fingers and get the process started today:
http://diabetesscholars.org/college-scholarship/
 
 
I owe… I owe… it’s off to work I go. That’s all for now. Have a great weekend!
 
 
 

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#DOCasksFDA: Excitement, disappointment, perspective.

November 5, 2014 – 11:00 am

Like so many others, I looked/listened/Tweeted in on the #DOCasksFDA presentations on Monday afternoon (or morning, depending on where you live). A conversation between the diabetes community and the U.S. Food and Drug Administration, it promised to open a window to the FDA’s role in our diabetes lives.

I was quite interested in what was going to be said, and how it would be presented. There were numerous presentations by FDA staff and government policy makers, and diabetes community movers and shakers.

Let me just say this, for people who haven’t been at a gathering of this type, and especially for those catching it via the webcast: I do understand that seeing everything via a webcast is not the same as being in the room. But only a few were going to actually be in the room, and that doesn’t mean the rest of us were going to be left totally in the dark. For people who have complained for so long about being left out of the process (define your process here), this was an important step, even if it meant registering for the webcast as a participant, then having to log in as a guest, which probably meant the same thing anyway.

Twitter-KarenBittrSweet

If you don’t know this already, the response was tremendous. In fact, so many people were logged into the webcast that it overwhelmed the web servers at the FDA.

Twitter-DiabetesMine

Honestly, I thought it was possible that we just overwhelmed the meeting capacity of the Adobe® Connect session that was set up for this event. Regardless, it was almost certainly a case of a huge amount of people trying to look through a tiny keyhole all at the same time.

In a way, that’s a good thing, right? We showed the FDA how big a group we are, and how seriously we take the FDA’s role in reviewing and approving drugs and devices. This is proof positive that we have serious questions and concerns, and a big desire to know more.

Twitter-gborkman

On the other hand, it was disappointing to have a large slice of the meeting completely lost. I mean, I started work at 7:00 a.m, worked straight through without a break until the webcast began at 1:00, then worked another two hours after, just so I could take it all in live. So when the webcast went down, then just the audio came back for me, then even that went down again, I felt a real sense of loss.

Twitter-StephenSType1
 
 
Still, I think a sense of perspective needs to prevail here.

Twitter-StripSafely

This is the first time a forum like this has been live streamed between the FDA and the diabetes community. If events like this were reccurring, I would feel good knowing the worst technical problems occurred the first time around, and things got better after that. I’m bummed about missing so much, but I’m willing to forgive a little more the first time around.

Also, we did have the Twitter feed (hashtag: #DOCasksFDA) to rely on when things went awry. It’s not the same as being there, but it is something.

And the best part is that the presentations will be available soon online. I’m hoping that includes recordings of the parts of the webcast those of us not in the room missed.

Most of all, it’s important to note two important things about that afternoon:

1. The FDA is engaging with us.

Twitter-FDA-Patients

2. The diabetes community showed an amazing amount of interest, concern, and advocacy during those three hours, webcast or not. This was Tweeted by Manny Hernandez in the first half hour, and the conversation only accelerated from there:

Twitter-askmanny

Considering the technical difficulties, I hope something like this can be done again very soon. The need exists. The desire is certainly there. I am very grateful to the FDA for agreeing to do this, and for trying to solve technical problems when they happened. I’m grateful to Kelly Close, Adam Brown, and the DiaTribe team for facilitating this event. And I couldn’t be prouder of the rest of the diabetes community, who turned out in oversized numbers to voice our interest in interacting with this government agency. It can only get better from here, yes?
 
 
 

By StephenS | Tagged , , , | Comments (5)