Monthly Archives: August 2013

Yay Vacation! On to Philly for #DSMA, then Ohio.

August 7, 2013 – 10:51 am

I’m on vacation! It has been a long time since I’ve taken consecutive days off, and I’m starting six days off that will take myself and The Great Spousal Unit first to Philadelphia, then to Cincinnati, where my father-in-law turns 80 this weekend.

First, I’m going to Philadelphia to see the #DSMA Live and #DSMA Twitter Chat happening Wednesday night. I’m hoping I can connect and re-connect with people I admire, some of whom I haven’t met yet. And I’m excited to see the DSMA Live podcast happening at the same time of the Twitter chat (this is a first for DCAF). If you’re in person, everything starts at 8:00 p.m. EDT. If you’re tuning in to the podcast and/or participating in the Twitterage, everything starts at 9:00 p.m. EDT.

If you’re not able to be there, you can listen in on the podcast by clicking here.

If you’re interested in participating in the Twitter chat (and who isn’t?), this is a good place to go for participation and to keep up on the fastest hour of the week.

Oh… and did you know that Diabetes Community Advocacy Foundation has a new website? It looks fantastic, and you should check it out! Instead of looking for Diabetes Social Media Advocacy, go to http://diabetescaf.org

dsma-social-meetup

Looking forward to connecting with you, either in person, via the podcast, or by Twitter Wednesday night. And I hope the rest of your week is super too.
 
 
 

By StephenS | Posted in Social Media | Tagged , , , , | Comments (3)

#StripSafely Update. And a question.

August 5, 2013 – 9:34 am

Safety of the test strips we use, and the meters we plug them into, is a great big deal to everyone living with diabetes. It also means a lot to the people who love me and count on me to be there for them.

So I aligned my views with those in the Diabetes Online Community who also believe that A) The 20 percent +/- factor that’s currently allowed for test strips is NOT NEARLY GOOD ENOUGH, and B) The fact that the FDA has no post-approval mechanism in place to verify the continued accuracy of test strips they approved earlier, or pull them from the market if they’re not, IS NOT OKAY.

As a measure of support, and to help in getting these wrongs righted, I wrote my elected officials in Washington. U.S. Representative Dutch Ruppersberger, D-MD, and U.S. Senators Barbara Mikulski and Ben Cardin, also D-MD, received e-mails from me expressing my concern and asking them to assist.

That was nearly three weeks ago.

But hey– a week ago I received an e-mail response from Senator Mikulski, the longest-serving woman in United States Senate history. I’ll share it right here, but be sure to come back after reading, because I want to ask about something.

Letter

Other than the fact that this was pretty much a form letter, I was actually happy to have received a response at all. Seriously, even if they’re not busy all the time, senators get requests from a seemingly endless stream of attention-grabbers and favor-seekers on a constant basis.

No, what really struck me were the two images at the bottom of the letter. You know, the Facebook and Twitter icons.

So I want to ask: What if a coordinated effort was put together to bombard Facebook and Twitter accounts of U.S. Representatives and U.S. Senators for the #StripSafely cause? It could start with House and Senate committee members responsible for FDA oversight, and perhaps move on to people with oversight of the U.S. Commerce department. Somewhere in there, we could get around to House Speaker John Boehner and Senate Majority Leader Harry Reid.

I don’t know… Maybe it all sounds a little too “Mr. Smith Goes to Washington”. But don’t we believe in our own cause just as much as Jimmy Stewart did in that movie? And I have to ask: Don’t you think that together, we could make some kind of impact? If there are so many people in on the #DSMA Twitter Chats every Wednesday, wouldn’t the same kind of numbers all tweeting or messaging at the same time, about the same thing, to the same people, get an elected official to take notice?

What do you think, Diabetes Online Community? Good idea? Bad idea? Feel free to leave your ideas below.

For more on this important issue, visit the Strip Safely central at www.stripsafely.com
 
 
 

By StephenS | Posted in Diabetes | Tagged , , , , , | Comments (2)

End of the line. This time.

August 2, 2013 – 9:42 am

My clinical trial is over.

Last weekend I made the trip down to Charlottesville to wrap things up. The group of us that participated in the trial sat together in a focus group to talk about our experiences as we went about our daily lives during the length of the study.

Our group was diverse: Different ages, from different parts of the eastern half of the USA, different walks of life. I loved spending the 2 1/2 hours or so hanging out with them and listening to their stories. In other words, a typical D-meetup, if under different circumstances than usual.

One of the things that really struck me was the comments in the group about how we gathered the daily information we entered for each day in the trial. With a couple of exceptions, we all gathered our data the same way. I thought that was interesting in that none of us were told how to gather the data. But because we’re all people with diabetes, we all knew how to get the data the easiest way, and we just had different ways to record it.

We talked a lot about the performance of the web-based application we were using. I can’t really reveal any details about that until the study is published… sorry about that.

The end of the trial also means the end of my use of the Dexcom® G4 continuous glucose monitor. I never thought I would hear myself saying this, but I miss it already. I’m definitely feeling the withdrawal symptoms this week. When my current CGM’s warranty period is over, I’ll be looking at the Dexcom again.

In the end, while I realize that what we accomplished in the trial didn’t move the diabetes needle too far toward a cure, I do realize that it did make a difference. It was truly an honor to participate. I’m happy, especially at this point in my life, to participate in something that might help others like myself. I’m not overstating it when I say that’s a really great feeling. And by the way, I can definitely see myself participating in another clinical trial in the future.

You don’t have to always be involved in something that involves investigational drugs that may or may not be successful. Sometimes you’re testing new technology or therapy; or in my case, taking a website for a spin and seeing how it works for your diabetes self-management. The point is, the opportunity exists for you to help move the needle toward the positive side for everyone living with and affected by diabetes.

Interested in participating in a clinical trial of your own?

The USA’s National Institutes of Health has a complete list of clinical trials taking place all over the USA, and even some outside of my country. To find them, go to www.clinicaltrials.gov and enter “diabetes” into the search box. A recent search found 9,994 studies.

JDRF has a very helpful web page that lists multiple sources for registering and finding out about clinical trials. Just go to www.jdrf.org/research/clinical-trials/ to find out more.

To read more about the University of Virginia’s Center for Diabetes Technology, including staff bios and more on Artificial Pancreas technology, visit the center’s website at www.medicine.virginia.edu/research/institutes-and-programs/cdt/the-center-for-diabetes-technology-at-uva.html
 
 
 

By StephenS | Posted in Clinical Trials | Tagged , | Comments (3)