Tag Archives: jdrf

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!

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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?

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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.

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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.

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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.

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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!

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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:

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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.

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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.

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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)

If this Champ With Diabetes can do it, I can too.

February 5, 2014 – 9:50 am

Time to introduce you to another one of our medal winners. Trust me: You’re going to want to read this story through to the end. Just reading about this athlete’s accomplishments makes me want to get out and conquer the world. Though I’ll settle for a metric century ride, a triathlon, and a 5K run (not all at the same time).

Bob Parant has been living with Type 1 Diabetes for 41 years now. The Long Island resident was diagnosed back in the 70s while getting a physical prior to competing in college (this is the second of our athletes diagnosed during sport physicals). As Bob says, it was the Dark Ages of diabetes:

“No computers, no glucose meters, no pumps, no support groups, no chat rooms and very little education on the disease and how to live with it.

Coach told me diabetes was dangerous and to take care of myself. That burned me up. What I did know at that time was exercise was good for diabetics. There was not much out there regarding handling your highs and lows while exercising. So from that point on I have always played a sport and worked out while finding the proper balance of carbs and low blood sugars.

Right after that diagnosis I played rugby for 7 years, then played softball and over age 30 hardball baseball league. After the team sports I relied on running on a regular basis and did many races varying distances. I then moved to biking as it was easier on my feet.”

Pretty great, right? But wait… there’s more. Brace yourself.

Three years ago, Bob lost part of his right leg due to infection secondary to diabetes. Think he was going to let that get him down? Think again. Bob unequivocally states:

“The diabetes never stopped me and the leg was NOT going to stop me either.

July 2013 I rode in my second JDRF Ride for the Cure. I was able to ride 65 miles in the JDRF Ride to Cure Diabetes in hilly Vermont and raised $7000. The previous year I won the ‘Spirit Award’ for the ride and the ‘Crankees Intrepid Award’ for most inspirational rider for the year and also raised $7000 that year as well. I cannot explain the feeling of accomplishment and pride after my battle to come back from the leg and diabetes. My family and JDRF family were all there cheering me on. As you can imagine, crossing that finish line both years was quite emotional. The first year I literally broke down at the finish line. Athletics have always given me goals and pushed me to stay positive in every situation and never give up or say ‘I can’t’ in sports or life. I hope by telling my story that this can encourage diabetics to get moving, stay active and that will keep you positive, eating better and more consistent A1c’s.”

BP

Even though all of that sounds like Bob is already busy 24 hours a day, he still finds time to serve as Research Information Volunteer for his local JDRF chapter, and he helps with the Kids Walk program at local schools. In addition to that, he was asked to speak at New York’s big Promise Ball this past year, where 2.1 million dollars were raised for JDRF.

Bob Parant, for your dedication, your perseverance, your triumph over adversity, and the inspiration you give all of us, we are proud to recognize you as a Champion Athlete With Diabetes. I promise you I’ll be thinking about you while I train and compete this year.

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You don’t have to be a beast of an athlete like Bob. Just get out and get going! If you’re living with diabetes, and you’re active; or if someone close to you is living with D and is active, we’ve got an honest-to-goodness medal we’d like to award you. It looks like this:

DSC01178

There are only four simple things to do to get yours:

1. The athlete receiving the award must be living with diabetes.

2. The athletic event must have taken place in the last six months. For now, we’re going with a pretty loose interpretation of the word “event”. If you feel you’ve accomplished something important to you, that’s an event. ‘Nuf said. And yes, we’re flexible on the six month thing.

3. Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal. Full disclosure: I reserve the right to use your testimonial here, on Twitter, and on Facebook. I will not use your name if you don’t want me to. As always, I will never share private information.

4. When you receive your medal, it would be great if you post a photo of it around the athlete’s neck. You can send a Tweet to @ChampsWithD (hashtag: #champdathletes) or post it on the Champion Athletes With Diabetes Facebook Page.

I think D-Athletes are amazing. It takes a tremendous amount of planning, effort, and bravery to compete, or maintain an exercise routine. Heck, sometimes, it’s everything we can do just to walk around the block. Getting out of your comfort zone and taking that brave step is something that should be recognized and rewarded.

If it’s a big deal to you, it’s a big deal to me too. I want to support you, or support the Athlete With Diabetes in your life. Send an e-mail for your award today.
 
 
 

By StephenS | Posted in Athletes With Diabetes | Also tagged , | Comments (9)

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)

Happy Friday – Thanks for the donations.

October 4, 2013 – 9:35 am

It’s Friday! Yaaaaaay! Better yet, it’s the eve of a week’s vacation. Because of work, I tend to go without during the summer months, so that means a bunch of days off in the fall. Maureen is on vacation too, and she’ll be heading to Florida to be with family. I’ll be staying home. But before vacation begins, I thought I would pass these tidbits along from my local JDRF chapter. Wherever we are, together or apart, we’ll be able to support the great diabetes efforts of JDRF by participating in the following:
 
 
– Get your flu shot! Now! From September 1st through October 31st, Walgreens will donate $1 to JDRF per flu shot given when a customer presents the JDRF barcode/voucher or identifies themself as a JDRF supporter at any Walgreens (or Duane Reade location in the NYC area). – Find out more and get the barcode/voucher, go to:
http://jdrf.org/wp-content/uploads/2013/08/JDRF_Flu_Flyer_Walgreens.pdf

– Now through October 5th (that’s Saturday), Advance Auto Parts is doing the make a donation/hang a paper sneaker on the wall thing in their stores. Make a $1, $5, $25, or $50 donation and they’ll dedicate a paper sneaker in your name. More importantly, your donation will help to fund research toward advanced drugs, therapies, and a cure.

– Also through Saturday, Marshalls is doing the same thing. Go buy a new outfit and make a donation. Or just make a donation. That would be okay with me.

– Finally, if you’re a Wawa shopper (convenience stores on the USA’s east coast—really good coffee), you have until October 20th to donate to JDRF by adding $1, $3, or $5 to your purchase at the checkout, or by adding your loose change to coin canisters at the store.
 
 
If you can, please donate to one or more of these fundraisers. And tell everyone you know about them! Who says diabetes people always have to be the ones donating money for JDRF? Have a super weekend, watch out for the weather, and keep showing that diabetes who’s boss.
 
 
 

By StephenS | Posted in Additional Inspiration | Also tagged , | Comments (0)