Category Archives: Events

JDRF Type One Nation DC Research Summit.

January 17, 2014 – 9:19 am

This post falls under the heading All News is Local, or in this case Regional. If you live in the Mid-Atlantic, you may already know about the JDRF Type One Nation DC Research Summit happening in Bethesda, Maryland (outside of Washington, D.C.) on March 1st. If not, you can find out about it at jdrfsummit.org.

It promises to be a day filled with information gathering, making connections with other PWDs and parents of CWDs, and hopefully, a laugh or two. What’s on the agenda? That’s what this post is about. I wanted to take this opportunity to let you know about the lineup of presenters that day. There is a separate youth program that, unfortunately, I don’t know anything about. But here is the agenda for the adult track:

The day will begin with a welcome from Piper Dankworth Sutton, Executive Director of the recently-consolidated Greater Chesapeake and Potomac Chapter of JDRF. As a side note, I have to think her job is a tough one, considering her chapter includes what a year ago was two chapters, over a large geographic area encompassing over 8 million people. That probably means hundreds of thousands of people living with Type 1 Diabetes.

Our moderator for the day will be Mary Kate Cary, who’s a former White House speechwriter, and currently a contributing editor at U.S. News and World Report, as well as a political analyst on National Public Radio.

Bethany Salmon, Senior Manager of the Research Business Development Group of JDRF, will talk about JDRF Translational Development: Partnering for Success, highlighting (I think) collaborations between JDRF and various entities doing research on Type 1 Diabetes.

Roland Tisch is a Professor in the Department of Microbiology and Immunology at University of North Carolina. His topic of discussion is Reversing Diabetes. Hmmm… I might have picked a different topic, but okay. We are talking about research here.

After lunch (did I mention lunch is included?), EUGENE BRANDON, PhD and Director of Strategic Relations and Project Management at ViaCyte will talk about Developing an Encapsulated Cell Therapy for Diabetes. Last year’s discussion about encapsulation therapy was my first exposure to the subject, and I’m looking forward to Dr. Brandon’s talk about it this year, as well as hearing him talk about ViaCyte’s collaboration with JDRF in this field.

Later, the subject will be Approaches to the Cure: Nanoscience and Immunology, presented by Stephen Miller, PhD, who is (long, impressive-sounding title coming) Judy Gugenheim Research Professor, Director-Interdepartmental Immunobiology Center, Department of Microbiology-Immunology, Northwestern University Medical School. Still with me? This is another topic that doesn’t get enough attention, in my opinion, so I’m hoping Dr. Miller can provide a little more insight for us.

Finally, the presentation I’m really waiting for: Kelly Close, Editor-In-Chief at Diatribe, and her colleague Adam Brown, Co-Managing Editor at Diatribe, will present Diabetes Technology: A Bridge to a Cure. Kelly is a well-known diabetes advocate, of course, and she participated in a bionic pancreas clinical trial up in Boston last year. After not making the cut for two artificial pancreas trials in the past year, I’m eager to hear about her experience firsthand.

All through the day there will be exhibits and book signings and chances to connect with people who walk the same stretch of road that you do, so to speak. After all of the speakers are finished, there will be a question-and-answer session with the panelists.

Why am I making a big deal of this now? Well, to begin with, I was asked to write something about it, by someone I respect, so that’s what I’m doing (no, I’m not getting anything in return). Also, and I’ve said this before, if you’ve never been to an event where this kind of subject matter is discussed, or if you’ve never been to an event with other PWDs and parents of CWDs, this is the perfect venue to get your feet wet. Laid back, supportive, and friendly. And free to attend.

So again… If you want to know more, or if you want to register, go to jdrfsummit.org. And let me know if you’ll be there, so we can connect!
 
 
 

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Like these links – Event Edition.

October 25, 2013 – 9:43 am

It’s late October, and with the chill in the air there’s an increased focus on current and upcoming events in the diabetes community. Take a look:
 
 
Thanks to the non-profit Diabetes Hands Foundation, The Big Blue Test is back! You know that November is Diabetes Awareness Month, right? November 14 is World Diabetes Day. Now until WDD, you (yes, YOU) can take part (and help people in need) by doing four simple things:

1. Test your glucose. Unless you don’t have diabetes, in which case you can skip Step #1.

2. Get Active. Exercise for 14 to 20 minutes. The form of exercise is up to you. Swim, play badminton, break dance, run naked through the streets… but don’t get caught.

3. Test your glucose again. On average, Big Blue Testers see a 20 percent drop in BGs after just this much exercise.

4. Share your results. Where? Here: http://bigbluetest.org
Also on Twitter (#bigbluetest), Instagram, Facebook, etc.
There’s even an app for that.

The really great part, besides the fact that you’ll feel better after, is that every time you log your goings-on between now and November 14, a donation will be made to non-profit organizations that are helping to save the lives of People With Diabetes by providing supplies, education, and services at the grass roots level. Get active and be an activist at the same time… I love it!
 
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Diabetes takes center stage in this post from Instructions Not Included. Becky in the UK has written her story and plans to perform it during Diabetes Awareness Month. How cool is that? Seriously, I think that’s very brave and inspiring. She has a request for the rest of us too: She wants us to take a picture of ourselves holding a sign with our name on it, and the words ‘I live in hope’. She hopes to use the photos in her show. Can you do that? Good. E-mail the photo to Becky at instructionsni@gmail.com.
 
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In December, Children With Diabetes (the people who put the Friends for Life conference together) is doing another Focus On Technology conference. I mention it here because there are so many events that happen in cities on the two coasts, and this one is in Cincinnati, Ohio December 7 and 8. Actually, it’s in West Chester, which is north of the city, which should make it pretty accessible to people from Dayton or even Indiana or Kentucky. The program includes a closing keynote address by Dr. Ed Damiano, discussing the bionic pancreas research they’re working on in Boston. When I saw him speak in February, he brought along the device they’re working with so we could all get a look. Just hearing his talk is worth the price of admission, and there should be much more. If you’re in the area, don’t miss it.

Go to http://www.childrenwithdiabetes.com/activities/Cincinnati2013/ to find out more. Click on the Program link at the bottom of the page to see what will be presented, and click on Registration at the bottom of the page to register.
 
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Finally, looking ahead, the date has been announced for the next JDRF Research Summit in Bethesda, Maryland (outside of Washington, D.C.). It will be on Saturday, March 1, 2014. The conference should be accessible by car or the Washington-area Metro, which connects to Amtrak, etc. No word yet on the presentations and personalities who will be there. But last year’s event was great, and very well attended. So put it on your calendar now. Registration opens on January 9. To find out more, go to http://jdrfsummit.org.
 
 
That’s it for now… have a spooky-great weekend!
 
 
 

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Tour de Talbot recap.

September 23, 2013 – 9:37 am

Okay… My 55 miles in the Tour de Talbot on Saturday was not my favorite experience on the bicycle.

I was running late all morning, I forgot to put on sunscreen (no burn issues after all), I almost forgot to put on my riding gloves (and I’m soooo glad I didn’t), the weather was iffy, and my BGs did not want to play fair. But when do they ever play fair? Heck, I didn’t even get a photo of anything on Saturday, except my dog when I got home. Not to worry, I won’t bore you with it here. But I did complete the 55 mile journey, in roundabout fashion, and today I have a sore behind and a sense of accomplishment.

So let’s start at the beginning. BG at the start: 219 mg/dL. This is entirely due to the fact that I didn’t bolus for breakfast. I woke up at 81 mg/dL, and I didn’t want to be nearly that low when I started the ride. And yeah, I ate a lot of carbs for breakfast. I set my temporary basal rate at 30 percent for 5 hours.

This is the most laid back event ever. I think I mentioned that last year too, but it’s true. Somebody gives a speech at the beginning that hardly anyone can hear, then we’re off without a horn, or crowds cheering, or any of that. Down a paved two lane driveway and out onto the highway that goes between Easton, Maryland and St. Michael’s (more on that later).

We wound around a bit and then, about three or four miles in, suddenly we’re on a gravel road. Gravel. On my thin little road bike tires. This went on for about three or four miles, I think, and the whole time I’m hearing the same complaints and hopes coming from the other riders. Mostly, “I hope I don’t wipe out on this gravel”, and “I hope I don’t get a flat tire from this gravel”. Oh, and “Who’s idea was this?”. And these are still roads that are traveled by vehicles, mostly local residents and big farm trucks kicking up gravel as they pass by. And this was just the first gravel road we traveled. I started counting the riders on the side of the road with tire issues. I counted ten in 55 miles.

We hit the first rest stop 12 miles in. Even though it’s only quarter past eight in the morning, the salty pickles out on the table at this stop really looked good. But I passed them up in favor of a salty/sweet nut bar. These are usually my go-to snack on these rides. BG at this stop: 129 mg/dL. Pretty crazy, right? I dropped 90 points in about 45 minutes. With a 30 percent temp basal and breakfast carbs still working in my body (I think).

The next part of the trip wasn’t too bad. 18 miles to the next stop. Someone drafted behind me for about the last ten miles of that segment, but it was okay and we made good time. I made the mile 12 to mile 30 segment in a little less than an hour. That’s pretty good for me, on a long ride anyway. At the stop I had another nut bar and waited about ten minutes to let my body calm down a bit after working hard. BG at this stop. 82 mg/dL. I don’t want to worry anymore, so I just shut off my pump for the rest of the ride, and grabbed a banana at the rest stop too. Instead of climbing a steep incline after the stop, I decided to walk my bike to the top of the hill before climbing on for the next 12 mile segment. I’m glad I did.

The next 12 miles were probably the hardest 12 miles I’ve ever biked. About a mile after the rest stop, we turned onto another gravel road. Not as bad as the first gravel road we were on, but I had to make sure I didn’t get too far toward the shoulder or I would definitely have been in trouble. But I also had issues with the weather.

The same front that brought rain to the JDRF Ride for a Cure in Nashville was making its way toward the mid-Atlantic. Ahead of the front were some pretty strong 15 to 30 mile per hour winds from the south. On this stretch, we were riding south (on the gravel road) for about five or six miles. The rest of this part went pretty much straight south too. Straight into the wind. In short, it was brutal. I was never more grateful to reach a rest stop.

I took a moment to sit down and collect myself, and check my BG again: 66 mg/dL. Are you kidding me? My pump’s been off for an hour (and yes, it took me an hour to bike 12 miles). So now, I have to decide if I can even continue. I started with some glucose tabs, then loaded up on handfuls of pretzels for about 20 minutes. When I checked after being at this stop for 30 minutes, I was at 149 mg/dL. At this point, I felt like I could make it the final 12 miles, especially since we weren’t supposed to go any further south.

Shortly after leaving this stop, I connected with a couple of riders who were on my route, so I decided to ride in with them. Now it gets even more interesting. We’re about six or seven miles away from the finish, and we must have missed a turn. Because it wasn’t marked. I had been hearing about issues like this all day. Signs pointed in the wrong direction by pranksters. Arrows marked along the roadway pulled up. That must have been what happened to us, because before we knew it, about the three of us were in the heart of Easton. This was not on the route map. Now what to do? Well, I knew how to get back from where we were, and I wasn’t interested in going back to look for a missed turn, and I didn’t know whether the rest of the route was marked properly either. My decision was to go the way I knew to go to reach the finish. The two riders I had been with since the last stop thought that was the thing to do too, so we rode right through historic downtown Easton, then over to the main highway back to the start/finish.

Then, the final joke: When we near the finish, there were volunteers at the two lane driveway, which was now closed, directing us to go to the next driveway and turn right. So we did that, turning onto the worst stretch of one lane gravel road on the entire trip. With vehicles leaving the venue, coming right at us.

Somehow, we made it through and I was able to finish. BG at the end: 88 mg/dL. I can’t say that I’ll sign up for this ride next year. There were a lot of tough, grind it out miles, but overall, I can say that I’m happy to have been tested and passed the test. We claim our victories were we find them. This one wasn’t pretty, but in the end, it was a success.
 
 
 

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Twenty!

September 5, 2013 – 9:25 am

Twenty years ago today, this happened:

DSC01067

We were married outdoors on a sunny 70 degree day the day before Labor Day, 1993. I was 31 years old– looking good in the tuxedo, if I do say so myself (Bond– James Bond). I had been living with Type 1 Diabetes for about 2 1/2 years by then.

Her mother asked her at some point if she really wanted to commit herself to someone who had to live with diabetes their entire life (her grandfather lived with Type 1 too). Her mother was really fantastic, despite what that sounds like.

Maureen: For saying yes to that question… For talking me into moving to the east coast a year later when I really didn’t want to… For letting me quit my job and work hourly as a temp in my mid-thirties (twice)… For enduring stupid jobs and abusive bosses so we could save our house… For taking in (first) my nephew and (second) your niece… For putting up with my shit and for supporting me through the last twenty years:

Thank you. I love you.

That photo was taken about ten minutes before the ceremony. If you’re getting married, don’t buy all that “It’s bad luck to see the bride/groom before the wedding” crap. I’ve lived twenty pretty incredible years with someone special. We knew each other pretty well by the time this photo was taken, long enough to not be afraid of a little superstition.

The secret to finding The One? I tell people to look for the most fun person to be with. If you wake up every morning and ask, “Who is the most fun person to be with today?” and the answer every day is the same person: Congratulations. You’ve found The One.

Here’s to twenty years with my One. Maureen, we make a good team.
 
 
 

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About that #DSMA Philadelphia meetup.

August 13, 2013 – 9:51 am

DSMA Philly

Since I’m back from vacation, and I finally have wi-fi access for the first time in almost a week, I should probably talk about the DSMA Live and DSMA Twitter chat that happened last Wednesday night in Philadelphia. I have never been in a room with even half as many adults with diabetes as I was that night. It was a pretty incredible experience.

At some point, I guess I’ll probably get used to being in rooms with other adults with diabetes. I haven’t gotten to that point yet. It’s weird because I’m almost never in a room with other PWDs. When I am, it’s wonderful because it’s empowering and uplifting and informative all at the same time. So it’s weird and wonderful.

That kind of environment is a by-product of what Cherise Shockley and Scott Johnson bring to the table with their efforts to bring people together and share how important it is to engage in discussions with others like ourselves. It’s the kind of quality that’s not easily defined, but is special and necessary at events like this. Sort of a “you know it when you see it” kind of thing.

I got a chance to meet a few people I hadn’t met before, and a few that I had met before. It was very nice seeing Molly McElwee Malloy, research coordinator at University of Virginia’s Center for Diabetes Technology. She’s also a Certified Diabetes Educator and an RN. She’s a Type 1 too, so it’s interesting to talk to someone who knows so much and lives with diabetes like I do. She made some great points during the podcast. I loved hearing Allison Nimlos talk about the Paleo diet, and I got a couple of great ideas for starter books. I’m not thinking of going totally Paleo, but I’d like to try it out, at least, because it really does appeal to me. And most diets don’t. Kelly Kunik was very kind and gracious, and we talked briefly about her talented niece, who is doing great. I didn’t get a chance to tell her that my nephew has done fantastic since living with us for a couple of years, and our niece is growing every day since moving in with us two years ago. I got to meet Colleen Gray, who is very nice and seems to have a great sense of humor. There was also Maria Qadri and Penny too, both of whom are great to follow on Twitter because they’re very witty and smart. And I got to meet Brea, a Best of the ‘Betes Blogs winner from last month who has a great story to tell, and tells it greatly.

You know, I didn’t think I had met too many people Wednesday until I read what I just wrote. But it appears that I did. It’s always great to put a face with a name, or vice versa. Mostly, it was great hearing the diversity of voices in the room.

How was it being in the room while DSMA Live and the Twitter chat were occurring at the same time? Honestly, it was a little hard to concentrate on one without losing track of the other. But after a while, I was able to handle it, I think. And honestly, I wouldn’t have missed it for the world. I vote for Cherise and Scott to do this every week in front of hundreds or thousands. How cool would that be?

I’m so grateful to Diabetes Community Advocacy Foundation and Roche for hosting this special happening close enough that I could attend. This also brought home to me the idea that I really need to find a way to do a live meetup of my own locally. Don’t know if I can pull it off yet, but this event definitely put it at the forefront of my mind again. And I have to admit: Even though it will be just a virtual meetup, I’m looking forward to this Wednesday too.
 
 
P.S. If you missed the original podcast, you can listen to it now by going to blogtalkradio.com and searching for DSMA Live, or by clicking here:
http://www.blogtalkradio.com/diabetessocmed/2013/08/08/dsma-live-in-philly
 
 
 

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