Tag Archives: Events

People are talking: #JDRFSummit Part two.

March 4, 2014 – 9:48 am

Saturday I was one of the many at the extremely well-attended JDRF TypeOneNation DC Research Summit, in suburban Washington. Lots of updates on research all over the diabetes spectrum, and a chance to interact with some of the attendees. Including one I was able to meet for the first time. There was an awful lot packed into one day, so I’ve broken it out into three days of posts. Yesterday, I covered the morning’s presentations. Today, I’ll cover the afternoon talks. On Wednesday, my interactions with summit attendees and a DOC meetup!

——————————————————————–

As I said above, there were lots of presentations Saturday. Before the main talks of the afternoon, there was a passionate advocacy update from Cynthia Rice, Senior VP of Advocacy and Policy at JDRF. To this observer, it seems like JDRF is working hard to expand their advocacy. Children’s Congress, Promise meetings with legislators, multiple outreach efforts. JDRF is advocating for all of us living with diabetes. Want to get involved? It’s easier than ever. To sign up, visit the JDRF Advocacy website here. Also, you can get advocacy updates on your mobile phone by texting ACTION to 53731 (JDRF1). Simple, yes?

——————————————————————–

After that was one of the best presentations of the day. Dr. Linda Gonder-Frederick, Clinical Director of the Behavioral Medicine Center, part of the University of Virginia Health System. In her talk, she looked at diabetes from a psychological perspective. I remembered meeting her in the course of one of my clinical trials last year. She seemed smart then, and smarter Saturday. A couple of the things she had to say:

“It is well documented that diabetes is the most difficult condition for patients to manage.”

“Think of diabetics like a snowflake… no two are the same.”

According to Dr. Gonder-Frederick, there are four coping strategies that serve PWDs well: Information gathering, problem solving, empowerment, healthy acceptance, dealing with negative emotions, and social support and appropriate help seeking. It’s not a surprise that rates of depression in people with diabetes is almost twice that among non-PWDs. Critical periods for psychosocial risk in PWDs include diagnosis, any time there’s a real change in care or treatment, and the transition from a pediatric medical support system to adult medical support. In fact, she told us that this is the time when most patients get lost in the system. The transition from pediatric to adult care is that hard sometimes.

Honestly, I’m not doing her talk any justice. If you get a chance to hear Dr. Gonder-Frederick speak, I highly recommend it.

——————————————————————–

The next two presentations were very scientific, and to tell you the truth, there was a lot of information given in a short amount of time. Let me see if I can give you the highlights from talks by Dr. Eugene Brandon of Viacyte, and Dr. Stephen Miller from Northwestern University Medical School.

Dr. Brandon covered the things that Viacyte is working on in the field of beta cell encapsulation, and how their research is going. The good news is that encapsulation human trials are scheduled to start this year.

Dr. Miller spent some time going over important research into nanoscience and immunology. Specifically, the difference between immunosuppressants and tolerance therapy. The appeal is the hope that immune tolerance therapy could be used to treat autoimmune disease, so (possibly) Type 1 diabetes could be averted altogether.

——————————————————————–

Finally, we got to hear Kelly Close of Close Concerns and Diatribe fame. Kelly’s an amazing advocate, and she’s been involved in artificial pancreas trials in both Boston and Virginia. In fact, she was a participant in the study I got booted from in January. It was great listening to her talk about what closed-loop testing is like, and mostly, what it feels like. That’s really what I wanted to hear, and I wasn’t disappointed. It was fascinating listening to her talk about the dichotomy of being connected to medical devices, but feeling normal throughout the night. No lows or highs to sap her energy or make her feel hung over the next morning. She also gave a great roundup on where diabetes technology stands today all over the world. Which is pretty exciting to say the least.

——————————————————————–

If you’re thinking it was a full day, you’re right. And that was just what was on stage last Saturday. Wednesday, we’ll talk about my interactions with a couple of the summit attendees, and my meetup with one of my favorite writers.
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (2)

People are talking: #JDRFSummit Part One.

March 3, 2014 – 10:13 am

Saturday I was one of the many at the extremely well-attended JDRF TypeOneNation DC Research Summit, in suburban Washington. Lots of updates on research all over the diabetes spectrum, and a chance to interact with some of the attendees. Including one I was able to meet for the first time. There was an awful lot packed into one day, so I’m going to break it out into three days of posts. Today, I’ll cover the morning’s presentations. Tomorrow, the afternoon talks. On Wednesday, my interactions with summit attendees and a DOC meetup!

——————————————————————–

The day began with a talk by Bethany Salmon, who is in charge of translational development for JDRF. What does that mean? I was wondering that when the talk started. What I found out was that it means the development and commercialization of therapies for people with diabetes. Those therapies include Artificial Pancreas, smart insulin, beta cell encapsulation, prevention, and restoration of functioning pancreatic beta cells. That last thing, Bethany reminded us, is JDRF’s definition of a cure. Any of the other therapies would be great developments, but they would also mean JDRF is still going to work for a cure.

Anyway, translational development basically means the JDRF team works to identify and accelerate projects. If they see something promising, they’ll provide matching funds for research. What happens then? They hold quarterly meetings with recipients of funding to make sure they’re on target. Recipients of JDRF research grants are held to specific performance milestones for their projects. It’s good to know JDRF is being responsible with the money they’ve raised over the years.

Ms. Salmon also shared a short JDRF video that spoke to me. To me, it’s the perfect video to show at gatherings like this, where some of the people in attendance may be feeling like the diabetes wheels are spinning in place, and they need a fresh pick-me-up. I’m happy to share it with you here:

——————————————————————–

Next was a great presentation from Dr. Trang Ly, who was filling in for an ill Dr. Bruce Buckingham, talking about closed-loop testing, and studies to try to help lower instances of hypoglycemia at night. Dr. Buckingham and Dr. Ly work in pediatric endocrinology at Stanford University. I’ve written before about the work they’re doing out there, and Dr. Ly gave us an update.

She talked about research on a low-glucose suspend system like the Medtronic 530g with Enlite. They found that LGS can prevent severe hypoglycemia in most cases, in both children and adults. Makes you wonder why Med-T didn’t try harder to get pediatric approval from the FDA for their device(s).

They’ve done a series of tests (in Australia, if I remember correctly) on predictive low-glucose suspend, where the system predicts a hypo, then shuts off the pump. They started testing with adults, then tested with teens, and progressively younger kids. They start testing with 3 to 6 year olds soon.

She also gave a recap of diabetes camp testing out in California. And she mentioned two studies starting soon: One with kids at Camp Jordan in Virginia, and bionic pancreas testing using a bi-hormonal pump up in Boston. Most moving to me was early on in her presentation though. She had handwritten answers from kids who were asked the question “What do you fear most about nighttime hypoglycemia?”. The answers: “Waking up in a coma and dying”, and “Not waking up”. Those are typical responses… but when you see them in the handwriting of children, who should never have to bear that kind of burden, it really hits you where you live.

And while I’m at it, let me pass along a great big thank you to children and their parents who agree to take part in this crucial testing of closed-loop systems.

——————————————————————–

Then it was Dr. Roland Tisch, who’s working out of the University of North Carolina, trying to see if there are options for reversing diabetes (other than, you know, cinnamon and okra). There was a lot covered in his short time on the podium, so you might want to check out his presentation when it gets posted online in a week or so. In short, according to Dr. Tisch, there are three keys to establishing remission in patients with diabetes: 1)Eliminating pathogenic T-cells in islets, 2)Increasing Treg cells to maintain long-term autoimmune protection, and 3)”Normal” immunity has to remain unaffected. In other words, fixing one part of our immune system doesn’t help if the therapy breaks another part of it.

Look for Dr. Tisch’s presentation later to learn more about pathogenic T-cells and Treg cells and why they’re important discoveries, and important parts of the research they’re doing.

——————————————————————–

All of this happened before lunch on Saturday. No wonder my head was spinning! Tomorrow, I’ll try to cover the afternoon speakers, and on Wednesday, more about the human interaction portion of this terrific event.
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (2)

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!
 
 
 

By StephenS | Posted in Events | Also tagged , | Comments (1)

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!
 
—————————
 
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.
 
—————————
 
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.
 
—————————
 
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!
 
 
 

By StephenS | Posted in Events, Like these links | Also tagged , | Comments (1)

D-Athletes ROCK.

September 20, 2013 – 9:25 am

I’m off today to do my 55 mile bike ride over on Maryland’s beautiful eastern shore. We start and end in Easton, which I like, because the area is about the flattest terrain I’ll ever ride on. It’ll be warm for this time of year, but the ride starts at 7:30 a.m., so if I put some real estate behind me early, I should finish by noon.

I know I wrote earlier this week about wanting it all to be over. But the fact is, I am pumped to do this ride tomorrow. That’s partly because I always get this way before an event. And it’s partly because of something else that I can’t reveal yet (sorry for the tease). I should be able to talk about it sometime in early October.

Anyway, I’m really excited to do this ride tomorrow, and I’m proud to be a Person With Diabetes who will be out there breaking stereotypes. I’m even more proud to ride in an event on the same day that others, in hilly Nashville, Tennessee, will be riding in the JDRF Ride for a Cure. I’m prouder still that many others with diabetes are training, participating, and yes, competing in athletic events around the world. And I’m not discounting you, all of you JDRF and Step Out walkers. What you do for all of us is special. It seems like the population of Athletes With Diabetes is growing every day, and I love it.

I hope that all of you D-Athletes run faster, swim longer, walk farther, and bike harder than I ever will. I will cheer you on all the way.

I am happy to be part of your team. Go us!!!
 
 
 

By StephenS | Posted in Exercise | Also tagged , , , , , | Comments (2)