Rekindling Hope

Screenshot of article at Insulin Nation

Insulin Nation features a story on the bionic pancreas

Hope is a strange thing for someone who has lived with diabetes for as long as I have.

It’s there.

Deep inside me somewhere.

But it’s dormant; smothered to sleep by decades of failed promises and premature excitement (usually involving cured mice).

Ed Damiano showed me something pretty amazing at the CWD Focus on Technology conference recently, and I felt a glimmer. It was like he had a bellows and was delicately nursing to life the embers of hope in me.

The Bionic Pancreas – the tagline on the website is “using mathematics to treat diabetes …five minutes at a time.

This bionic pancreas is not a cure. It is exactly what it sounds like. A bionic pancreas. Which is kind of what we have now, but with a couple of weak links. We are one weak link, and our crippled glucagon response is the other (that last one is complicated, and beyond the scope of this post).

Ed and his team have created a system that uses existing technology (a Dexcom G4, an iPhone, and two Tandem tSlim pumps) to make a new decision about insulin and glucose dosing every five minutes. I won’t get into the studies and details here, it’s all on their website. But I will say that they are on-track (with an aggressive trial schedule) for commercialization in 2017.

The online publication, Insulin Nation, pictured above, has a lot of information in their story, and I encourage you to check it out. Ed has also been featured on a bunch of different websites and presents regularly. Just plug his name into Google and you’ll find more information than you can handle.

What really stoked the hope fire in me was the description of getting back to a normal life. To sit down at a meal and not think about the grams of carbohydrates, but to only need to tell the system if this meal is larger or smaller than average for you.

Can you even imagine?

And it’s almost here.

2017 is an important marker for Ed Damiano. That is the year that his son, who lives with type 1 diabetes, goes off to college.

If he’s willing to strap this thing onto his own child, I’m willing to give it a try too.

I can’t think of better way to close this post than to quote a friend of mine, Sean, who sat next to me as we listened to Ed.

But most of all I learned about hope.  More specifically, about watching in wonder as dormant and forgotten hope is revived before your very eyes into something stronger and more vital than it ever was before you lost it.

and

Today, though, I feel like I have seen the future, and a future which is not at all far away.  I have seen it in tremendous detail, for that is how it was shown to me.  I have seen pictures, and data, and technology, and journal articles, and a device, and a patent, and–perhaps most importantly–the unbridled passion of a man who I KNOW will make it happen.  I know this not because his passion is contagious (it is), not because his results are stunning (they are), but because he has already made it happen.

 

 

“An Orange Peanut?! For Me?!”

Lots of news to spread today! Buckle up for some bullet points.

FocusOnTechnologyLogo400Are you near the Washington, D.C. area (Crystal City, VA, specifically)? Come to the CWD Focus on Technology regional conference and expo happening next weekend, February 1-3, 2013. Sebastien Sasseville is the keynote speaker, and this dude is a total badass. He jogged across the freaking Sahara desert, m’kay?  I’ll be doing a session with my favorite short d-blogger on diabetes devices in the real world. It also sounds like a handful of DOC locals will be getting together for dinner on Saturday night. I’d love for you to join us!

logoRonen Keinan asked for help recruiting early adopters to a new tool his team is working on called Medivizor. It’s a service that offers personalized information updates around serious or chronic medical conditions to people and their caregivers. They believe they have solved the ‘needle in the haystack’ challenge and are able to give you updates that are relevant, understandable, and actionable. If you’d like to help them out, head over to medivizor.com and sign up.

pic small cover uploadI recently finished “Islands and Insulin” by Erin Spineto. Erin lives with type 1 diabetes and was drawn to challenge herself by sailing a 22-foot sailboat down the Florida keys and writing a book about the journey, from conception to completion. It’s an enjoyable mix of love, learning, diabetes, and adventure. The book will hit the shelves soon, and if you’re looking for a fun book with plenty of diabetes mixed in, this might be a good one for you.

photoI’m loving the new look of the Insulin Nation website! I’ve always enjoyed their content and the new site design makes it easier to get to.  If you haven’t had a look, please go check it out. “Iron Andy” and his crew are doing great work there.

diatribe_logoAre you a subscriber to diaTribe? If not, you should be. We spoke to Adam Brown, co-managing editor,  on DSMA Live last night. diaTribe is a top-notch publication that provides incredible information that’s super easy to understand. And it’s free!

indexI recently connected with Stanley Rak, from Food Facts, a website that says it is the largest, most comprehensive internet source for nutrition facts. Anyone out there used this site yet? How does it compare to Calorie King (what seems like the gold standard for many)? At first glance, it looks pretty impressive, especially how it lists common allergens and calls out controversial ingredients. Thoughts?

white-and-black-iphones-heroDo you know about Glooko? It’s a cable for your iPhone that connects to a bunch of meters and downloads your readings. They’ve just released their Logbook Charts site which allows you to get a better look at your information. Along with that, they are introducing their brand new community blog which will focus on real people with diabetes, better ways to use Glooko, as well as recipes and wellness information (site is no longer online).

I have been totally hooked on the “Bad Lip Reading” videos.  ”An orange peanut?! For me?!”

Diabetes Scholars – Generosity In Action

The Diabetes Scholars Foundation does amazing work.  They raise money to help get families and young adults to Friends for Life conferences.  As if that isn’t enough, they also raise money to get young adults to college. I’ve written about what they do in the past.  I am a big supporter of them, and appreciate all of the hard work they do.

At each Friends for Life conference, Diabetes Scholars holds some sort of fundraising event. I have attended for the past two years. Each year, at each event, I am blown away by the generosity displayed. The money raised at the Friends for Life events goes directly to bringing families and young adults to future Friends for Life conference.

These conferences change lives. They change lives. Don’t take my word for it.  Have a look at just some of the blog posts in the diabetes online community about this year’s conference.

I’m blown away by the items that were donated, I’m blown away by the number of people that attend, I’m blown away by the money raised. I’m just blown away by all of it.

I’m writing this to give you an idea of what exactly happens at a Diabetes Scholars event. Not enough people know about it, and that is one small area where I can contribute.  Sharing news of good people doing good work is something I am happy to do.

There is a live auction, complete with an auctioneer!

http://youtu.be/4XDVT4rcBMg&rel=0

Cool, right?

There is also a silent auction, with donated items lined up, from end to end, on both walls.  The number of items given to help bring people to Friends for Life is amazing.  I grabbed a few pictures, but they don’t do the event justice.

I was able to snag, with the help of Kelly, a cool necklace for my wife, for about $25.  A great deal, and the money goes towards a great cause.  I only wish I had more to spend!

(Big shout out to Jeff Mather for helping me figure out how to work my blog…)

How did they do this year?  Straight from Mary Podjasek, just a few days after the event (“Howl” was the entertainment – dueling pianos):

After paying Howl and the Marriott, it looks like we cleared $36,000. This means we can bring 25 families and 5 young adults next year. This year we brought 22 families and 7 young adults but had almost 100 applications. We would love to one day be able to bring everyone that applies. There is such a huge need. Thanks to everyone who helped to make our event such a success. Let’s try for $75,000 next year!!

Way to go!  As she said above, there is such a huge need.

How can you help?  Spread the word. Donate auction items.  Donate money.  Attend their events. Spread the word some more.  There are lots of ways you can help, even if you are not in a position to help financially.

Not enough people know about this great organization and what they do.  That is something I can help with.  So can you.

Diabetes Scholars – Howl at the Moon!

Howl at the Moon!I’m posting this on behalf of Mary Podjasek, President of the Diabetes Scholars Foundation.  Her mission in life is to help bring more people to Friends for Life (not to mention college scholarships), and that is a mission I support 100%.

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Each year, Children with Diabetes hosts a spectacular diabetes conference where thousands of people come together.  It’s an opportunity for individuals, impacted by diabetes, to increase their overall knowledge of diabetes management, receive up-to-date research information and build a lifelong diabetes network.

Unfortunately due to economic situations, some families will never have the ability to attend a conference and participate in this very unique experience.  The Diabetes Scholars Foundation (www.diabetesscholars.org), a 501(c)(3) non-profit, is committed to changing this by providing conference scholarships to families in need.  For families dealing with economic hardship as well as a life threatening illness, the conference has both an immediate and long-term impact on them.  

The Diabetes Scholars Foundation is hosting a Howl At The Moon Fundraiser on Saturday July 7, 2012 (7:00 pm) at the Marriott World Center in Orlando Florida. Please join us for the most unique dueling piano experience in the country.  Come sing, dance and howl the night away as talented musicians perform your favorite songs.  This high energy live show is centered around audience participation and two dueling pianos.  Tickets to the event are $55 and include appetizers, two drinks and a silent/live auction.  Funds raised from this event will benefit some very worthy families, help us carry out our mission and continue our programs. 

We have the following opportunities are available:
$55 – Includes ticket to the show, appetizers and two drinks
$250 – Hip Hop Sponsorship – Includes acknowledgement at event, 2 tickets to show, appetizers & two drinks
$500 – Country Sponsorship – Includes acknowledgement at event, 4 tickets to show, appetizers & two drinks
$1,000 – Jazz Sponsorship – Includes acknowledgement at event, 8 tickets to show, appetizers & two drinks
$2,500 – Pop Sponsorship – Includes acknowledgement at event, 12 tickets to show, appetizers & two drinks
$5,000 – Rock N Roll Sponsorship – Includes acknowledgement at event, 15 tickets to show, appetizers & two drinks

Please consider supporting the Diabetes Scholars Foundation’s Howl at the Moon fundraiser and make an impossible dream possible for some very special families.  Thank you for your consideration

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Thank you for all you do Mary!

If this doesn’t quite do the trick for you, you can always make a general donation.  If you have a blog, or webpage,  another way to help is by grabbing the badge off to the right and display it on your site (link it back to http://www.diabetesscholars.com/)

Ring It In CWD Style

The CWD Family Support Weekend runs through the new year holiday.  Many of these families have been spending the new year holiday together for a number of years.  The kids and teens are all about bringing in the next 365 days with the CWD friends they have grown up with.

The Hitchcock family invited everyone to hang out in their room for the evening, and it was a lot of fun.   There were people coming and going most of the night – the smart ones retiring early (we did have to work the next day), and the rest of us staying up well past our bedtime to watch the ball drop.

At about 11:50 the CWD Teens crashed the room.  All of a sudden there was a parade of fifteen or twenty teens and tweens streaming in through the door and filling the room up with teenage noise.   Screeching, yelling, clapping, laughter and giggles.  It was NUTS!

Then someone passed out noisemakers…

I’ve heard people on television talk about how loud the Metrodome football stadium can get during a Vikings home game.  In fact, it has been said it’s the loudest venue in the NFL.

The Metrodome had nothing on the Hitchcock suite that night.

At 11:59:11 PM, one of the teens started counting down, 49! 48! 47! As she got closer, more of them joined in. 46! 45! 44!

The noise and chaos kept swelling, and at one point I leaned over to Andrea Hulke and said “this is the most obnoxious … and totally AWESOME thing ever!!!”

When the ball hit the bottom, and the new year rolled in, I thought the windows of the room were going to be blasted out by the noisemakers and screaming.

It was so cool.

At 12:01 AM, 1/1/11, Jeff kicked everyone out, just like he promised.  As I walked back to my room I couldn’t help but to miss my family terribly.  But I also thought about how these kids, these families that come to the CWD events, they have something special together.  They have something that would have changed the way we all grew up with diabetes if it had been around back then.  It helps them deal with the mental aspect of living with diabetes on the most basic level.

They know they are not alone with it, and they have friends to reach out to when they need it.

Faces and Names, Faces and Names

The recent CWD Family Support Weekend I attended had about three-hundred people, plus the volunteer staff.  While much smaller than the giant Friends For Life conferences, 300+some is still a BUNCH of people.

It took me at least three or four introductions, plus a nametag, before I could remember people’s names and faces.  Even with that, I can only remember a fraction of everyone I met there.

It blew me away how Jeff & Laura knew everyone’s names.  I mentioned that to one of the other people down there and they said that not only do they know people’s names, but they will often ask about extended family members and/or pets!  And to take it to another level, they do that at Friends For Life – their biggest conference boasting over three-thousand people.

Jeff-Hitchcock-Laura-Billetdeaux

I don’t know how they do it.

Another Angle

Big smile from Joe Solowiejczyk

Big smile from Joe Solo - photo, Jeff Hitchcock

I first heard Joe Solowiejczyk when he was in Minneapolis a few years ago to speak at a JDRF Walk kickoff meeting.  I liked him almost instantly.  He has lived with type 1 diabetes for about 50 years, and his specialty is the mental aspect of living with type 1 diabetes.  I am a big fan of Joe.

In one of the meetings I attended while in Florida for the CWD 2011 Family Support Weekend, Joe mentioned something that opened my eyes to an angle of connections that I had never thought of before.  Joe is involved with the Johnson & Johnson Diabetes Institute, whose goal is to transform diabetes care by working with healthcare professionals to help them do more and help more.

Joe talked about healthcare professionals feeling like they are in the trenches all alone, and how there is power in them coming together to talk about things. Just like us.  We often feel alone in our everyday lives, and we experience power in coming together to talk about things.

I thought that was pretty neat, and it made me realize that they need that connection just as much as we do.

The Sun Hat

I have rarely, if ever, seen Jeff Hitchcock without a camera.  Not only does he always have a camera with him, he also knows how to use it.  Jeff spends much of the conferences roaming around with his camera and capturing some of the magic.  I love that he does that!  Most of the pictures from the 2011 Family Support Weekend are online now, and there is a good one of my new sun hat.  Thanks Jeff!

I said in yesterday’s post that I’d get a picture up soon, so here it is.  This is Kerri and I presenting to the CWD teens.  I was so impressed with how savvy these teens were when it comes to behavior and safety online and in social media.  They know the deal, their parents have taught them well, and they also watch and learn from everyone they see.  They are so bright, and it was a real treat to get to know them a bit.  Can’t wait until the next time I see them.

Kerri & Scott presenting to the CWD Teens - Credit Jeff Hitchcock

The Sun Hat - Credit, Jeff Hitchcock

Sun Hats and Funny Pictures

Picture of Sam & I trying on goofy beach hats in the gift shop

Sam & Scott trying on hats

On the beach for the CWD Staff Retreat on Wednesday, I got pretty sunburned.  It was bad enough to give me a little headache later in the evening, and I thought I’d be miserable for another day or two.  Thankfully, after washing up for the night, putting on some fancy hotel brand lotion, and getting a good night’s rest, I felt pretty good the next day.

Before heading outside again I decided I should probably get a big sun hat and some sunscreen lotion (like I should have done the first day!).  So I stopped by the gift shop at the hotel, and found Sam Billetdeaux and his girlfriend down there.  Sam is a fun guy, so I asked him to help me find a good hat. We decided against being serious and productive, and instead had a little fun.

We did not choose either of these fine examples of sunblocking brimmage, but I found a nice big hat that would get the job done.  As soon as the pictures start coming online from people (Jeff & Kerri), I’ll grab one and show you how it looked.  I even managed to pack it in my suitcase for the trip home without destroying it!