Tag Archives: jdrf

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)

Asking Congress for renewal of the Special Diabetes Program.

September 13, 2013 – 9:43 am

I’m meeting with my congressman on Monday morning as part of a larger group sponsored by JDRF to ask for renewal of the Special Diabetes Program here in the USA.

The SDP is funded at 150 million dollars per year. Current funding is in place through September 2014, one year from now.

You might think, “Wow, 150 million? That’s a lot of money”. Actually, it isn’t. Want to know what a lot of money really is?

– The annual cost of diabetes to the American economy is 245 billion dollars. 2-4-5 Billion.

– Nearly one third of the annual Medicare budget for older Americans is spent on People With Diabetes.

On the other hand, the $150 million spent on the Special Diabetes Program has helped to kick start and then continue research toward advanced drugs and therapies, better technology, and yes, research toward a cure for diabetes. Artificial Pancreas research and development has been helped along by the SDP, and it’s a game-changer for all PWDs if we (ourselves and Congress) help to get it across the finish line to approval and practical application. Advances in eye care and BG management have also become a reality thanks to the SDP.

Since the program is funded for the next year, why should we worry about getting renewal now? Because researchers have to plan and schedule clinical trials and other elements of their research and development well in advance. If they don’t know what will happen with regard to the Special Diabetes Program, they may hesitate before starting critical phases of their trials. Or they may delay starting trials at all. As you know, every minute we delay is another minute we have to wait for the next breakthrough in therapy, drugs, or signs toward a cure. We shouldn’t have to wait. Just ask a parent who is caring for their child with diabetes. They’ll tell you: We’ve been waiting long enough.

If you have the opportunity, help JDRF advocate for continued funding of the Special Diabetes Program. More information is available about the SDP by clicking here.
You can read more about JDRF initiatives and start getting involved yourself by clicking here.
 
 
 

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

#JDRFSummit 2013, Part Two.

March 13, 2013 – 9:51 am

DSC00615

There was a lot of information shared during the Summit last Saturday (don’t miss Part One), and not all of it was during the formal sessions. But I’ll begin with that, in the second part of the day, and cover some other things at the end. So if any of this starts to bore you, remember to check out the end of this post.

The second part of the day started with Roy Beck from the T1D Exchange. Roy is founder and Executive Director of the Jaeb Center for Health Research in Florida. Right now, T1D Exchange operates in three parts: A Clinic Registry, with over 65 clinics participating and 26,000 individual participants; A Biorepository, sharing and exchanging meaningful data related to diabetes; And MyGlu.org, which “is an active and diverse type 1 diabetes (T1D) online community designed to accelerate research and amplify the collective voice of those living with T1D”. Roy revealed some very interesting statistics that they’ve compiled from their participants. As in… All of the T1D Exchange participants were averaging home BG monitoring at least 5 to 6 times per day. But also in the data is the fact that none of the participant age groups had hemoglobin A1c results under 7.4. The numbers were better for those using a pump, but overall, they still averaged 7.4 or higher in all age groups. Wow.

To finish out the day were a couple of Andersons. Daniel Anderson, PhD, talked about new materials and drug delivery systems as they relate to possible islet cell encapsulation. The idea is not to create a little pancreas, but to create lots of little pancreases to start doing what the original gave up on a while ago. Drug therapy would have to come up with something that would keep the beta cells from coming under attack after the surgery to encapsulate, but still be able to detect glucose, and help foster an environment that would produce insulin.

Randy Anderson, PhD, provided a lot of detail about commercial development of drug/bio products to treat and possibly cure diabetes. He told us that there were 12 products related to diabetes in commercial development back in 2004. Today there are 94. He spoke about Roche’s Diaport idea. And his feeling is that the best hope in this area would probably be something called a Curative Hematopoietic Stem Cell transplant. His description kind of went over our heads at the table we were sitting at. Plus, we wondered about the availability of viable stem cells. But the ideas expressed were interesting, and I want to do a little more investigation about this.

Okay… Yesterday, I mentioned a few brushes with D-celebrities:

In the exhibit/vendor space, I came across Christopher Angell from Glucolift and his dad. Always ready with a smile and a handshake, I was happy to see they were doing well. But I need to remember to catch up to them early, before they sell out of everything.

I met Amy Ryan, who’s out promoting her book, Shot: Staying Alive With Diabetes. It’s the first D-book I can ever remember reading (other than one on my day of diagnosis– but that’s another story), and I’m enjoying it so far. There may be more in this space about it later.

I got an unexpected surprise in meeting Scott Strumello and Bennet Dunlap. They were in the exhibit space talking Diabetes Advocates, Diabetes Hands Foundation, and Friends for Life. Always nice to put a face with a name, and Scott asks great questions.

Oh, and I inadvertently got to meet Miss America 1999 and T1D Nicole Johnson, the event moderator. At the lunch break I realized I had left my meter in my truck. So I headed across the room since that was the general direction I needed to go. I stopped to say hello to Molly McElwee from the UVA Artificial Pancreas team, and then I turned and practically ran into Nicole. She said “Here’s a guy who looks like he knows what he’s doing”, and asked if I would snap a photo of her and a fan. So I did. I feel a little guilty about admitting this, but I sort of messed up the first one just so I would have to take a second:). Don’t ask me why I didn’t get a photo for myself. It just didn’t occur to me at the time.

All in all, a great day filled with lively discussion, some of it over my head at times, but nonetheless very enlightening. Also, the lunch talk with my table mates, who are parents of Type 1 kids, was worth the trip all in itself. It might not seem like it, but I’m hearing that T1D kids are growing up in the USA with increasingly less stigma tied to diabetes. In other words, while things are far from perfect, they’re living more normal lives than similar kids have ever lived. Here’s hoping their lives will someday include a cure for this curse upon us all.
 
 
 

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

#JDRFSummit 2013, Part One.

March 12, 2013 – 9:39 am

Saturday was a beautiful, sunny early March day. And I spent it inside, at the 2013 JDRF Type 1 Diabetes Research Summit. As I mentioned in last Friday’s post, it was a day filled with lots of discussion and presentations on Artificial Pancreas development, islet cell research, and more. Also, a few brushes with D-celebrities. Many thanks to the local JDRF people who made this event happen. I don’t know how you did it with so few volunteers, but it was great.

Diving right in…

We were welcomed by Tad Wood, Executive Director of Maryland’s JDRF chapter, and a wicked bike rider. Look for him at the ride for a cure in Vermont later this year. Our moderator throughout the day was Miss America 1999 and fellow T1D Nicole Johnson, who stressed how cool it was that there were so many families in attendance (there was a separate children’s program). She talked about our “AHA” moments, and I suppose there were more than a few for some at this event.

Bill Parsons, JDRF International board member and chief of staff to congressman Chris Van Hollen of Maryland, gave the JDRF “Less Until None” speech. The idea is to systematically remove the burden of diabetes until a cure can be found. That means making diabetes less of a burden for patients, less invasive, with less complexity. That would be nice.

Next up was the Artificial Pancreas team from the Center for Diabetes Technology at the University of Virginia. They covered a lot of the ground that I’ve already covered in this space (click here for more). What was really interesting to me were two things: One, I enjoyed looking around the room and watching the look on people’s faces when it clicked and they finally understood what all this Artificial Pancreas stuff meant. Two, the part about the remote monitoring that I wrote about in this post. When parents saw this, there was an immediate reaction. In short, parents want this like now. Later, at the question and answer session with the panelists, they were asked if they had contemplated releasing the remote monitoring prior to any AP approval. It wasn’t said, but I’m thinking this is not happening right now, even though it would be great. First, for it to work the way it’s designed right now, it requires an AP device, which hasn’t been approved yet. But, I’m wondering… could there be an app for that in the future? In other words, the CGM data uploads to an app on your mobile phone in real time, and the information is made available in a secure way through mobile technology. In theory, it sounds doable to me, but it would also require resources from the AP project to work on this piece alone. My guess is that JDRF is not funding something like that right now, but again, it would be great.

Also included was a talk from clinical nurse trial coordinator Molly McElwee, another Type 1 who spoke about her own experiences working on the project. She spoke about her worst day with diabetes (she described her talk as her own “Diabetes Naked”, in front of everyone). She took the low she experienced from that day, her pump and CGM data, and they put it through an AP algorithm at the center. In the algorithm, she would have received an alarm 37.2 minutes prior to hitting the 70 mg/dL mark, telling her she was trending down quickly. How cool is that?

Now, let’s get into islet cell talk. Chris Newgard, PhD, spoke with a great deal of passion about the research that’s being done to both discover why islet cells die in people with Type 1 Diabetes, and why it’s been so difficult to figure out how to successfully implant islet cells and make them expand. He feels they’re getting closer, and there are a few possible ideas being investigated. Including something that looks a lot to me like the BioHub thing that everyone was complaining about last week. I have my doubts, frankly… but even if islet cell transplantation or expansion of functional cells doesn’t happen, they’re still learning an awful lot about this important aspect of Type 1 Diabetes.

All right… I can see that this is getting long already. So there will have to be a part 2, hopefully tomorrow. So much to share with you.
 
 
 

By StephenS | Posted in Diabetes | Also tagged , , | Comments (3)

Things to consider this weekend.

March 8, 2013 – 11:09 am

Just finished up a great visit with my endocrinologist this morning. More about that next week. In the meantime, in case you didn’t hear about these, here are a few things for you to mull over this weekend:

I’m headed to Bethesda, Maryland (okay, North Bethesda, Maryland) on Saturday for the 2013 JDRF Type 1 Diabetes Summit. Lots of Artificial Pancreas and Islet Cell talk, and a chance to commune with other Type 1ers. I’ll try to write about what I find out next week. If you see me there, I hope you’ll stop me and say hello. It would be my pleasure to meet you. More information about the summit is available at http://www.jdrfsummit.org.
 
 
The Medicine X Conference is scheduled to take place on the campus of Stanford University September 27, 28, and 29. Courtesy of Christopher Snider, notice that MedX is taking submissions for ePatient scholarships to attend the conference. Find out about it at http://medicinex.stanford.edu/medicine-x-alliance-health-epatient-scholarship-program-2013/.

Man, that’s a long web address.
 
 
Finally, I found this little tidbit in my inbox from the U.S. Food and Drug Administration:

FDA wants you to be a part of a new working group “that is geographically diverse and consists of experts and interested persons from all stakeholders in the HIT (Health Information Technology) community to help develop the required strategy and recommendations.”

If you would like to nominate someone or even yourself to serve on this new working group, please visit http://onc-faca.altaruminstitute.net/apply and complete the application by March 8th, 2013.

That’s today, folks. Hurry. And enjoy your weekend!
 
 
 

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