Coco

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Lilly and Disney at FFL and Beyond

Lilly is connecting with Disney to help families live with diabetes. I was one of a few bloggers who received a little sneak preview of some of their early steps this morning.

Type 1 care is more than tests and shots and I think both Lilly and Disney are taking real steps on a path that I hope evolves into a broad spectrum of support for living with t1 with hope and optimism. 

Here is a quick overview: Lilly and Disney showed a kids book with Goofy (my non d son's favorite when he was little) and a new type 1 character. The story line helps break down some misconceptions and gives kids with t1 a Disney character of their own. They also announced an official guide to the parks for type 1 visitors. It is a start that I hope leads to better type 1 awareness in the parks. My dated unofficial guide is at http://DisneyWithDiabetes.com.  

They also announced a new website at

http://family.go.com/parenting/pkg-type-1-diabetes/

I played with it on their iPad. It is a great start for newly dx families.  I look forward to seeing this site and the other parts of the relationship grow. Chapter books for Tweens, cooks books for me and more. I applaud the idea that type 1 care is more than drugs. It is a whole person thing. 

There is some official legal gibberish that I am meant to include that says I went to an educational event. What is important is that they did NOT give me an iPad or anything else cool.  (I considered trying to swipe the iPad  but I was badly out numbered) In all fairness, what I get wrong about this cool start to a future of Lilly and Disney working together is my fault not theirs. I will attach that legal stuff when I get the official copy but for now this is posting from my phone in the hallway.

FTNW: Data Standards

Here are a few quick links that help make the case for data standards, not just for diabetes management but in the larger health context. I particularly like this little comment about standards as "a path out of high-cost, locked proprietary systems in the end-to-end ecosystem."

http://www.cmio.net/index.php?option=com_articles&article=27860&publication=56&view=portals

http://www.technewsdaily.com/biometric-sensor-networks-health-2711/

Thank for the Father's Day Shoutout

I was thrilled to be asked by Sanofi's Discuss Diabetes to join in their fathers day series of blog posts. I am privileged be there with some other guys who I an happy to call friends to share a few thoughts on being a diabetes dad.

Knowing the many great dads in the diabetes online community it is an honor to be asked to be one of the guys representing all of us this week. Yesterday they featured my good friend Manny Hernandez. No spoilers other than to say some other great dads are coming later in the week. I know I look forward to hearing from them.

I am sure all of us featured and all the diabetes community dads agree that the real privilege isn't about a day, it is the joy of the 24/7 lifetime fatherhood gig.

Thanks Laura for the invitation to represent the brotherhood of diabetes dads. I hope I do us all proud.

Pennsylvanians: Oppertunity to Support of Safe at School Legislation

Pennsylvanians: Safe at School legislation for diabetes is pending and we have an opportunity to be supportive of it to our legislators.

The ADA has a quick and easy way to reach out. I also suggest sending and individualized communication if possible. Here is a link to ADA's information on the issue. As always vote early and often.


Here is what I wrote:

Students with diabetes most typically are type 1 diabetics. That is the form of diabetes that is an autoimmune disease. They require insulin injections and management, not as the result of life styles but as a result of their bodies no longer making insulin. Injected insulin is a balancing act. Many of the daily school events from physical education to the stress of academic work can and do impact that insulin balance. Kid may need help maintaining that balance.

With two insulin dependent type 1 students, I know first hand that this is a challenge. The clarity of this legislation will make life easier for schools, parents and mostly kids.

Safety for Pennsylvania students with diabetes means making sure schools understand diabetes and create safe environments for students to learn. More than anything schools, all schools public and private need guidance on how to create that safe environment. This legislation provides even handed, wise guidance.

Often schools officials see significant problems in creating that safe environment. The bill you are considering helps create that environment in a cost effective way. It provides for schools to train adults in the school to safely respond to an emergency when a nurse is not available.

In the current time of budget constraints safe at school programs that train adults to respond can help maintain a safe learning environment in a medically, educationally and fiscally sound manner.

FTNW: Animas/Dexcom Vibe gets CE Mark

From the News Wire: Animas Dexcom CGM combo get approved in Europe. Here are the highlights and a link:

Animas® Vibe™, the First Integrated Offering from Animas Corporation and Dexcom, Inc., Receives European CE Mark Approval:

WEST CHESTER, PA, June 2, 2011 /PRNewswire/ — Animas Corporation announced today the receipt of CE Mark approval for Animas® Vibe™, the first and only continuous glucose monitoring (CGM)-enabled insulin pump system with Dexcom G4™ CGM technology.  Animas® Vibe™ brings together the unique features of an Animas® insulin pump and the convenience of Dexcom CGM, which is the only sensor approved for up to seven days of wear. More here.

 

Thanking a Brilliant Star

There is a nice article on Boston.com about people who have lived with type 1 diabetes for a log time. Like half to three quarters of a century. The story is about the things that made them thrive not just survive.

I think that thriving is a great plan. It takes other people to make thrive happen. I encourage you to read the article with an eye towards seeing how others help you thrive. I think about that in the context of this line from the piece, “With the right constellation of proactive activity, you can manage it.’’

Managing it, thriving, require a constellation. A whole bunch of stars. Stars do a lot. They inspire, they can be a point to navigate by and sometimes they just sparkle. They can’t be seen in the bright light of daily activity, they come back out in the quiet of the night.

Certainly individual stars shine bright, moms are key in this article and in most diabetic kid’s lives, yet they are not alone. There is a constellation.

I like to think of all of you as part of our constellation. You are all stars in my eyes and if our respective daily activity prevents me from seeing you shine today, I know calm clear nights are coming to help me see you all.

Thank to each of you for sharing your individual brilliance.




Oh and and bacon too. You know who you are and you are a star. 


LY/MI

FTNW: Continua

FTNW for those who don't know but may care, and that is a small small group I am sure, is From The News Wire. My short hand for stuff that may be of interest.


This one is about the Continua Heath Alliance. It is something I keep an eye on as it may be a source of data standardization.

So for my few fellow geeks, here is a link to the latest state of the Alliance bit from Continua.

Vote Jen

The DOC's own Jen Hanson (See Crazy Cool Canucks) has been selected as a finalist in 2011's Explore Magazine Top 30 Under 30 Outdoor Adventurer Contest!

The winner will be announced next week, and chosen based on the finalist with the most number of votes (facebook likes). Here how to show Jen some of that DOC Love Ya / Mean It vibe:

1. First, 'LIKE' the Explore Facebook Page (found here: www.facebook.com/exploremag)
2. Click on, and 'LIKE' Jen photo (by following this link: http://on.fb.me/jVr5ye )



Do your DOC thing. Vote Jen.

FTNW: Interoperablity

Ran into this blog post today:

Lack of Interoperability Limits Personal Health Solutions

One of the key recommendations is that the buyers of personal health solutions need to understand and value interoperability, and demand it from vendors.

“The project partners share the belief that if Europe wants to reap the full benefit of personal health systems, health stakeholders must understand the benefits of interoperability, and be empowered to demand those systems from vendors”, says Veli Stroetmann, researcher at Empirica. “Only if there are buyers who demand interoperable systems, vendors will bring them to market.”

 I would to have the option of demanding systems instead of systems being demanded by type 1. Veli, I don't think you get it, that kind of influence exists in discretionary markets, where folks can choose not to use products. Type 1 diabetics don't have the option of not choosing a glucose meter.