Glu

Glu is part of the T1D Exchange, a very significant effort to cure T1. At first glance it is a social media site but there is very much more. 

Glu is a way that you and I and every other T1D household can connect to a Type 1 database and if we choose share our information with the folks trying to find better treatments and cures. 

Your Diabetes May Vary. So Your Diabetes Needs to be Part of the Cure.

Glu is the portal to do that.

At the JDRF Research Summit in DC T1D Exchange gave a presentation that I think is a fantastic overview of thier programs. I video taped it and worked in the slides from the power point. 

I found out about T1D Exchange when they came to our endo appointment.  I have been in the beta test of the site for about a year. Glu is opening soon. Now  is a great opportunity to become involved in the cure process. I encourage everyone involved with T1D to have a look. 

Oh and on Glu I am BadShoe - Connect with me when you join.

Here is an email I was asked to forward to my friends, like you:

Greetings! 
Thank you for all your help so far in being a part of the closed beta test of Glu - a new research-based community for people touched by type 1 diabetes.  

Your feedback has been invaluable and, in the last couple of weeks, we've added Shout Notifications, the ability to track your A1c in the Health Record and the ability to view oldest or newest Discussion posts. There are many more updates in the pipeline and, in the meantime, we'd appreciate your help by encouraging your friends and family who are touched by type 1 diabetes to take part in the beta test and help build the Glu community.  

Please could you forward this email on to them or ask that they email 
info@myglu.org with the subject line "myglu" to get the invite code. They can also text "myglu" to 41411 for a registration reminder. 

Many thanks for all your support so far - we will continue to keep you informed as we approach the full launch.

Best wishes, The Glu Team

Sara's Message on Fairness, Disclosure and #MedtronicDAF

I again had the privilege of joining a number of other Diabetes Online Community writers as a participant in Medtronic's Diabetes Advocates Forum last Friday. Our host, Medtronic paid for travel, room and fed us for the time we were in LA. They did not ask us to make any specific comments or any comments at all.

They presented topics including their sensing program, work towards and artificial pancreas, MySentry, a Build-a-Bear Lenny the Lion (that we responded to a lot more than apparently the internal staff at Medtronic though we would,) presented a book and talk about Better by Chuck Eichten and gave us some time to talk about what was important to us as diabetes advocates.

I hope that we listened attentively and questioned with the passion of people who appreciate progress made, but are still impatient and passionate about better diabetes care. I don't know how or why I was chosen to receive an invitation. The T1D's in our household are not Medtronic customers. The choice of what pump, if any, my kids wear, if any, is theirs alone. I have reviewed some Medtronic initiatives one of which I had given me some real concerns. The issue was about the Lenny the Lion iPhone app and an initial version that collected email from potentially little kids. To their credit they changed the app which I still never reviewed.

One of the conversations that I had with other DOC folks was about sharing our strengths and not repeating or competing with others in the DOC. My good friend Sara writes on Moments of Wonderful that the privilege of attending these events giver her a feeling that it is unfair. I can not equal Sara's eloquent consideration of the matter and strongly encourage you to read her post.* Particularly as this year Medtronic has offered a trial use of the MySentry product. Medtronic wants honest and thoughtful feed back. If one of my kids is willing to wear the sensors, I hope that our household can again provide feedback that is useful to future users.

I hope that the group of DOC writers who participated collectively can have an impact on the development of Medtronic products that benefits all future patients. To the extent that we can represent other effectively hopefully there is a balance in our participation that addresses the question Sara raises about fairness.

I believe that those who sponsor these events appreciate honest feed back. That is one thing I am good at.  Very many over the course of my life have said too good at. I hope that I am a honest, thoughtful and at time both funny and forceful advocate for people and families living with diabetes. I think that type 1 household have a unique ability to appreciate the balance of disparate things, like say carbs, exercise and insulin. Maybe advocates and industry can have a similar relationship. If so then on balance I hope my participation can be fair.


*Kim also has wonderful comments on TextingMyPancreas.

Other YDMV Posts on MedtronicDAF
http://www.ydmv.net/2012/04/art-and-science-on-walls-of-la.html
See last years post disclosure. 

iCo Therapeutics and JDRF Team Up

iCo Therapeutics and JDRF Team Up

to Support Phase II Clinical Trial iDEAL for Diabetic Macular Edema 

--Trial that aims to address the leading cause of blindness

in people with type 1 diabetes and type 2 diabetes being led by Johns Hopkins investigators--

iDEAL Phase II Study Update

March 28, 2012, Vancouver, Canada—iCo Therapeutics (TSX-V: ICO), a Vancouver-based drug reprofiling company and JDRF, the largest charitable funder of type 1 Diabetes (T1D) research have joined forces to investigate a potential new treatment for one of the most common complications of diabetes, diabetic macular edema (DME).  The iDEAL study is a Phase II clinical trial to evaluate whether the drug iCo-007 could help to treat DME in people with either T1D or type 2 diabetes.  The study is being conducted at the Wilmer Eye Institute of the Johns Hopkins University School of Medicine.  

bit.ly/HnGkde via jdrf

Who Ya Gonna Call?

Ghostbusters if you have a free floating apparition.

But if you are in the media and are writing about diabetes where are you going to get an informed patient voice?

Diabetes Advocates Offer Assistance in Accurate Reporting in the Media
27 Mar, 2012 17:00 CET
”We want to help get it right,” states diabetes advocacy groupTuesday, March 27, 2012 (BERKELEY, CA) – Did you know there are more than five different types of diabetes? If your knowledge of diabetes is defined by what you hear and see on the news or in movies then you probably don't. Diabetes Advocates, a nonprofit program made up of influential members of the diabetes community has launched a media outreach campaign, designed to assist the media on all things diabetes.  

Kelly Kunik, a member of Diabetes Advocates, stated: “Today is Diabetes Alert Day in the US and we are trying to stress to all media sources that more due diligence is required on everyone’s part when reporting on diabetes. We want to help all sources ‘get it right’ but also stress the importance of explaining the differences among ‘all things’ diabetes.” 

See full press release here: http://www.cisionwire.com/diabetes-advocates-a-program-of-the-diabetes-hands-foundation/r/diabetes-advocates-offer-assistance-in-accurate-reporting-in-the-media,c9236817

Do You Do It?

Download?

I have been to a few diabetes events where a point was made that few folks download there stuff* (* a word that hear means; meter, pumps, CMG, food log, workout schedule and a partridge in a pear tree.) Why is that?

Now that may come as surprise to folks who have read my bits on diabetes technology, DEWY and the data frontier that while I value data, we don't download. So forgive a little Sheldonesque nerdieness and let me suggest that there are reasons we don’t boldly go where no one has gone before.

In our case it is too much of a PITA - pain in the Apple. We use Macs. A program is not Mac compatible if it requires me to run windows on my Mac or even an old version of Mac OS. For that matter a program isn’t PC compatible if it can’t run on the current version of Windows either. All of which is totally irrelevant because the stuff may not be best downloaded into a Mac or Windows computer anyway. Possibly the target device device should be more, dare I say it, in touch with our lives - portable across all the devices we use. It should probably be in the cloud and accessible with any computer or phone with current browser.

I realize that may give a lot of cardiac physicians patients at FDA a heart attack. But the reality is dirt simple: people choose to carry mobile devices. These could be a great conduit to move information relevant to diabetes management into a data cloud. To boldly go where the PWD already are.

Syncing data is a manual process. Why is that? Why do we need to drag out a cable connect it to some legacy port on a computer and jump through hoops to move the data? At one point our the meters and pumps all used cables connecting to the serial port but the Windows XP box I had at the time only had one such port. Naturally the cables were different so to down load the meters and pumps meant swapping cables. Care to guess how often that seemed like a good idea?

Why do we need to manually sync at all? Why not just introduce the stuff* to our cell phone. Like paring a head set and then let the devices do all the work. Isn’t that what the devices are meant to do. Diabetes care is extra work. Why in the name of all things holy do we have to do extra processes to sync the stuff that is already extra work.

I think the prime directive for device manufacturers needs to be to not inter fear with the  lives that they touch. Look we all know Kirk broke the prime directive every other episode but at least there was some token angst before heading off into a romance with some alien babe.  Strive for no extra work.

The data we downloaded was less than complete. Why doesn’t the information a PWD enter into the bolus wizard come out with the download? Also the limited data downloaded it ends up in different programs. Wouldn’t it be great if the meter, cgm, pump info and maybe user information like ran three miles all showed up on the same report?

What the heck why isn’t that report smart? The rules of diabetes are not that complex. Can’t the devices apply some algorithms and point out trends.  Like, "Dude you are always high at 4:30, seriously look at these numbers." Or how about, "Listen man I love ya but I haven’t seen at lunch time blood check in ages how do you feel about a little reminder?"

Why don’t we download?

• Not compatible with our computers or devices.
• Our diabetes varies and at times we vary the meters we use.
• It is a different manual process for each device and all are pain in the ass.
• The data ends up in different reports
• It hard to pull together to figure out how it impacts life.
• Diabetes is already an intrusion and this is an intrusion we can choose to skip.

That maybe more than enough from me. What about your views on downloading, do you do it? Why or why not and how can it be mage better?

Previous data rants at YDMV:

http://www.ydmv.net/2011/04/diabetes-data-standards.htmlhttp://www.ydmv.net/2007/08/and-i-would-like-side-order-of-holy.html

Proud of the Kid

Connor spoke at the American Diabetes Association's Greater Philadelphia Area Chairmans's Reception the other day.

Did a nice job.



Proud of the kid, even if he is not much of a kid any more.

Beta Cell Stress Could Trigger Type 1 Diabetes @JDRF

Before T1d Stresses patients, stress on the beta cells may trigger T1D. Which matters because understanding how it works help find cures. So knowing what you don't know helps.

Study provides important clue in type 1 diabetes; could help scientists identify and validate potential drug targets to alleviate ER stress and preserve beta cell mass in T1D
In type 1 diabetes (T1D), pancreatic beta cells die from a misguided autoimmune attack, but how and why that happens is still unclear. Now, JDRF-funded scientists from the Indiana University School of Medicine have found that a specific type of cellular stress takes place in pancreatic beta cells before the onset of T1D, and that this stress response in the beta cell may in fact help ignite the autoimmune attack. These findings shed an entirely new light into the mystery behind how changes in the beta cell may play a role in the earliest stages of T1D, and adds a new perspective to our understanding how T1D progresses, and how to prevent and treat the disease. 

More about the study, published in the March 22 issue of the journal Diabetes, the researchers, led by Sarah Tersey, Ph.D., assistant research professor of pediatrics, and Raghavendra Mirmira, M.D., Ph.D., professor of pediatrics and medicine at the Indiana University School of Medicine is online here: 

http://www.eurekalert.org/pub_releases/2012-03/jdrf-rfb032212.php 

Thanks Riva for the Shout Out in @JDRF Research Summit Column

Riva Greenberg has a write up of the JDRF Research Summit in her Huffington Post column. She nicely details the topics covered that day. She also quotes my YDMV write up saying;

What I, and more than 600 attendees with Type 1 diabetes, family members, health care providers and industry representatives, learned in a nutshell is what blogger Bennet Dunlap put so well, "I don't see a magic bullet coming but I do see different approaches to tackling things that will count as a cure. Those will happen like everything does in increments. Along that journey we'll see better care before cures. So prevention may come before restoration of beta cell function, that's cool, steps matter."

Thanks for your kind comment Riva, I am flattered.

If you missed the event please read Riva's piece to get a glimpse of what you missed. Two of the day's presentations are available on theBetesNOW.

Meet the T1D Exchange
Top 10 Things We Don’t Know About Type 1 Diabetes

The Best Pump

The question which is the 'best' insulin pump floats up in diabetes conversation regularly. Best is a natural but probably the wrong question.

The quality of pumps and their ability to perform the basic insulin delivery functions is so good that these days users and their care teams have the potential to define the device and vendor that most appropriately fits a person's unique lifestyle. That is a real wordy way of saying, ‘there is no best pump.’

Happily one size does not fit all.

People with diabetes have different needs because their diabetes varies. So don't look for the absolute best pump but to the device that best accommodates your individual lifestyle. This dude may love his backpack,  but it may not be your best choice. (And what is in the giant bottle on the bottom of that thing anyway?)

Design and feature matter. For example the patch, folks seem to have a love/hate relationship with the OmniPod. That is great. If you are drawn to the patch pump, no tubing, PDA driven approach -great. If like my kids. You think it is too big and uncomfortable and tube are okay a more traditional pump may be better in your life. There are a lot of criteria individuals can consider. Remotes are really great for little kids. Lock the pump down and have mom or dad operate it with a remote control. How much insulin do you use and how much does it hold. Is it a color a young girl is comfortable wearing 24/7.

CGM may matter. If CGM integration is mission critical only Medtronic has int on the market in the USA. Animas, Roche, OmniPod, and Tandem are in the on-deck circle with Dexcom. Remember that deck circle is a baseball term. There is no clock in baseball and Animas, and Omni pod have been next in the line up for years waiting to come to bat. Some of the fans in the stands are getting rowdy and jeering the Ump wanting to see them come to bat. Food databases are touted as a key feature. If they are to your look carefully at the implementation and ease of building realistic meals. Can you customize the food database to your needs.

Service matters. Check it out by calling the service in the middle of the visit by the sales team. Like everything else service varies. We have had great service from Animas other say they have had issues. Read up on TuDiabetes and CWD and keep in mind that when the device is as integral a part of life as an insulin pump, individual service expectations will be very high.

Sets matter. People talk about pump features, but the set and how it feels going in are where the rubber meets the road. -  Well, the insulin meets the subcutaneous tissue. Try on sets as part of the sales process. Sets plural, not set.

Instead of which is best maybe the question should be what features best adapt to my lifestyle. That the art and science of insulin pumping have progressed from that backpack size prototype, in the black and white pictures above, to diverse, miniature devices is great.

What is best is we get to choose based on our individual preference.


Related posts from the YDMV archives:
Why Pump
What would be Really Cool.

Updated with some grammar & spelling fixed 5/31/16. Sure there are still a ton of errors. My Writing May Vary

#TwoBits - Research Videos on Faustman and T1D Exchange

Meet the T1D Exchange from the DC JDRF Research Summit on theBetesNOW
http://thebetesnow.com/?p=201

Manny has a fascinating video interview with Dr Faustman on TuDiabetes.
http://www.tudiabetes.org/video/an-interview-with-dr-faustman-2012