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Posts from the ‘Diabetes Advocacy’ Category

The NEW Jerry the Bear.

Since they’re local to me here in Rhode Island, I drove up to the Jerry the Bear office to meet with my friends Aaron Horowitz and Hannah Chung, creators of Jerry the Bear.

“It’s awesome to see you guys! Where have you been the last few years?”

After hugs and hellos, I realized my question was unfair. Because they haven’t been hiding but instead, the team behind Jerry the Bear has been working tirelessly to change their business in efforts to meet their mission of getting Jerry into the hands of every child diagnosed with type 1 diabetes globally.

That’s quite a mission. But if anyone can accomplish this goal, the driven, passionate, creative, and all-heart team behind Jerry can.

Just your friendly neighborhood Jerry the Bear!

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“As a business, we know that Jerry the Bear works, but in order to succeed and survive, we need to make the business work. We’ve been working to move our company from a direct to consumer model to a business-to-business model. This means we’re not selling our bears directly to people but instead have partnered with two different distributors in order to get Jerry into kids’ hands,” said Jerry the Bear co-founder and CEO, Aaron Horowitz.

Namely, they’ve partnered with Beyond Type 1 to handle domestic and international orders (except Canada) and Diabetes Express for our neighbors to the north.

“We want to improve life with diabetes for kids by giving them something positive to associate with diabetes,” said Hannah Chung, co-founder and CCO.

The Sproutel team did a lot of research in developing new Jerry. In addition to marathon sessions with post it notes, building paper prototypes, and “body storming,” the team went into the field to access kids in their natural play habitats. Hannah told me that she went to playgrounds during the development phase in order to work with kids and see if they could hold a bear and a phone at the same time, testing out how the app might be physically managed by their target age range of 4 – 9 years old.

“I’d go into the playground with a bear peeking out of the back of my backpack and a handful of permission slips, talking with kids and their parents. We play games like Simon Says in order to see if kids could find the bear’s belly button or elbow, and whether or not they preferred phones or tablets.”

The mental image of Hannah traipsing through Rhode Island playgrounds with a mission to improve the diabetes experience and a stuffed animal keeping watch over her shoulder sums up the Jerry philosophy for me. This team – Hannah, Aaron, Joel Schwartz, and Brian Oley – are changing the way newly diagnosed kids with diabetes are introduced to diabetes.

I think about my own diagnosis back in 1986 – what a difference it would have made to be handed a friendly bear instead of an orange to practice injections on.

In meeting the new Jerry the Bear, the first thing I noticed was that the touch screen tummy of his predecessor was gone. Coming in at a price point of $55 versus the $299 cost of Original Jerry, New Jerry (henceforth known simply as Jerry) is a soft, plush animal without any plastic or metal hardware attached to him. He’s snuggle-ready. Looking similar to my daughter’s army of Build A Bear stuffed animals and sporting giant, Beanie Boo-esque eyes, Jerry looks like huggable buddy, the perfect comfort companion for kids with diabetes.

What’s replaced the touch screen belly, however, is an amazing upgrade. Jerry now comes with a digital world that lives on an iOS or Android device, and the app is completely free. And on Jerry’s plush body are scannable patches that serve as unique QR codes, giving rise to augmented reality play.

“We were excited to see Pokemon Go! come out and see such success,” said Aaron. “Jerry has that same kind of virtual world superimposed onto the real world. Now it is easier for Jerry’s actions to be procedurally detailed.”

Checking Jerry's BG.

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This means that you’re not just squeezing the pad of Jerry’s finger, but instead you’re walking through all the details of checking blood sugar, from putting the test strip into the meter, pricking his finger, squeezing out a drop of blood, and applying the blood to the strip. The tasks feel real, and they feel thorough.

DO feed the bear!

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The app doesn’t require an actual Jerry the Bear stuffed animal to engage in Jerry’s world, though, and that’s one of my favorite upgrades to this experience. While Jerry himself requires a purchase, the app is free for download. And with that download comes a full world of diabetes experiential learning through the Jerry lens.

“My favorite things about [new] Jerry are that you can explore Jerry’s world in full just on the app, and also that scanning his sites gives you detailed steps around how to use Jerry’s diabetes kit,” shared Hannah. Aaron agreed, adding, “Also that you can experience Jerry instantly through the app. And that the action of scanning changes the world around you, through augmented reality play.”

“What’s the weirdest thing you saw during the test group sessions?” I asked.

Aaron laughed. “You wouldn’t believe how often kids feed Jerry’s butt.”

So there’s that.

While Jerry is aimed at helping kids in the  4 – 9 year old range who are newly diagnosed with diabetes, his potential reaches FAR past that specific demographic.  Jerry, in our home, has been used to help my daughter understand her mother’s diabetes.  He’s been a teaching tool to show kids in her class and our neighborhood what diabetes is all about.  Imagine Jerry as part of a diabetes camp experience, where teenagers can lean on levity and being silly with a stuffed animal to work through some of their frustrations.  Or helping open up discussions for all age ranges about diabetes distress or burnout.  Jerry could be a powerful conduit for conversation for all people touched by diabetes.

This little bear has potential, and plenty of it.

One more thing:  I’d love to share Jerry with two Six Until Me readers, and all you need to do is leave a comment.  Through a random number generator, I’ll select two commenters to ship a snuggly Jerry to.  This giveaway will be open until Sunday night at midnight eastern time, and winners will be notified by email.

Want to enter?  Leave a comment, and be sure to include your email!

You can check out Jerry the Bear’s new app by downloading it from iTunes or Google Play. You can also follow Jerry on Twitter, Facebook, or Instagram. To order your own Jerry, visit Beyond Type 1 (or Diabetes Express, if you’re in Canada). Thanks to the Sproutel team for letting me come over and play!

Spare a Rose.

I’ve been writing this website for almost twelve years.  The support, advice, and camaraderie I’ve found in the diabetes online community has made the last twelve years with type 1 diabetes among my healthiest and most successful.  The supply of insulin carefully tucked away in my fridge, along with access to an excellent medical team and the financial means to manage my disease, keep me alive.

I’m lucky.  In a lot of ways.

Today is my birthday.  The greatest gift I can have is another year of life, and I don’t take that for granted.  If you’ve found hope, or support, or joy, or friendship, or love in the diabetes online community, I’d really appreciate it if you would consider donating to the IDF’s Life for a Child campaign through Spare a Rose.  If you aren’t able to donate, would you mind sharing the donation link?

Flowers die.  Children shouldn’t.  Every small donation helps save a child.

 

Looking to make a difference? Here’s how.

Scrolling through a newsfeed these days can be downright painful.  There’s not a lot of happiness or success being highlighted, and that can take a toll on your mental health.  What can you do to make a difference?

There is something you can do.  Something you can do this minute.  And your actions have the power to save the life of a child.

Today marks the beginning of the Spare a Rose campaign, which runs every February 1 -14th.  The idea?  Instead of buying a dozen roses for your loved one, buy 11 and take the value of that spared rose – about $5 – and donate it to IDF’s Life for a Child program.

“Living with type 1 diabetes can be challenging wherever you live, but in some countries lifesaving insulin, management tools and education are entirely unaffordable or even unavailable. Life for a Child partners with diabetes centres in these countries to supply young people with these vital components for life. We are working towards the vision: No Child Should Die of Diabetes.

The program commenced in 2000 and currently supports over 18,000 young people living with type 1 diabetes. In 20 of the 42 countries where we work, we have the resources to help every diagnosed child. With your support, we can achieve this in all 42.”  – LFAC website

I looked in my fridge this morning and saw three months worth of life-saving insulin sitting there, all casual, in my butter compartment.  Seeing that stash of insulin made me feel lucky.  So I spared a rose.

And I hope you will, too.

 *   *   *

You can participate in the Spare a Rose campaign by sharing the donation link, spreading the word on social media (use the hashtag #sparearose), and asking folks in your family, neighborhood, and office to consider joining the efforts.  Thank you for helping make this campaign a success and for taking care of our diabetes community both here at home and across the globe.

World Diabetes Day 2016.

It’s World Diabetes Day.  And how do I feel, after 30 years with type 1 diabetes under my belt (and above my belt and in every organ and all over my face)?

LUCKY.  Effing lucky.  Because according to the demands of my body, I should not be here, but because of science and access, I am alive.

I clicked on the Google homepage today and saw that, finally, after years of asking and hoping to see Google acknowledge the diabetes community through a Google doodle, our community was highlighted on the homepage.  There we were, represented in retro fashion, alerting the world that people with diabetes would be absolutely sunk without the contributions of Dr. Frederick Banting almost 100 years ago.

If I had been diagnosed before Banting and his crew changed the diabetes world, I would have died, my body starving to death as a result of not making insulin.  Insulin is crucial to my survival.  Seeing 90 days worth of insulin collected in my kitchen is pretty damn humbling.  What keeps me alive is stored next to the butter in my fridge, and that’s beyond humbling.

I do not take this life for granted.  

Today, on World Diabetes Day, more people are paying attention.  Even this whole month, with the focus on diabetes, people are tuning in and listening. We have their ear.  So grab them by that ear and remind them that diabetes month is November, and diabetes day is today, but diabetes is EVERY DAY for people touched by it.  We’ll still be stashing our butter compartments with insulin in December, and every December after that.

How can people help, way past today and this month?

I’m glad you asked.

People can donate to the International Diabetes Federation’s Life for a Child program.  They can also gear up for the Spare a Rose campaign, which takes place every February.  If your butter compartment is stashed with insulin, consider those who don’t have access and please help.  You can donate directly by clicking here.

They can also explore some of the diabetes advocacy organizations, like the JDRF or American Diabetes Association, or some of the more grassroots groups like Children with Diabetes, the Diabetes Hands Foundation, Riding on Insulinthe Betes Organization, Nightscout Foundation, Diabetes SistersDPACConnecT1D, the Diabetes Community Advocacy Foundation, DOColors, or Glu.  Or any of the other ones I haven’t listed, because there are many.

Participate in the Big Blue Test, or the World Diabetes Day 24 hour chat (#WDDchat16).  Or share their stories through the JDRF, ADA, or IDF campaigns.  You can do that RIGHT THIS SECOND.

If healthcare professionals are checking in on this post, please consider recommending the diabetes online community as a resource for your patients.  AADE President Hope Warshaw has created a one-sheet to help HCPs jump into the space, and there’s always the #DSMA chats that take place on Wednesday nights at 9 pm eastern.  Peer-to-peer connections can make all the difference for your patience.  Please encourage exploring the DOC as an option for your patients.

And give.  Give financially to organizations that lift the message you want lifted.  Give your time to efforts that improve the diabetes experience.  Give your story life outside of the diabetes bubble and give the gift of education and information to people who aren’t familiar with diabetes.

Happy World Diabetes Day, you guys.  Continue to educate, to change the game, to disrupt, to make a difference.  Continue being you, making crummy use of insulin but making an enormous difference for people with diabetes.  <3

 

Diabetes Month: Ask Me About My Diabetes.

At 4 am, when I woke up to hang out with my little apple jack to feed him, my blood sugar was 108 mg/dL.  He ate and we both went back to bed.  When I woke up at 6.30 am, my blood sugar was somehow 221 mg/dL.

What the hell happened?!  Usually, breastfeeding makes my blood sugar drop, not rise.  Was there cortisol on board due to not sleeping?  Does my morning basal rate need to be tweaked again, now that I’m 10 weeks postpartum?  Did the potato salad go bad and exact revenge on me?  If two carbs left the station at 4 am, one going into my mouth and the other going into the baby, would they arrive on my meter at the same time?  Bonus point if you show your work.

Diabetes is the ultimate math problem.

This diabetes month, I want to make an effort to “show my work” so that folks both in and outside of the diabetes circle have a better sense of what it’s like to live day-to-day with diabetes.  Which brings me to this:

After posting this image as my Facebook profile picture, hoping people would ask questions about diabetes, my friend Chris Snider (<– always advocating, always inspiring) connected with me and after some quick back and forth, #amadiabetes came to be.

The hashtag stands for “ask me anything” about diabetes and in the spirit of spreading awareness and empathy, we’re encouraging our friends, family, and followers both with and without diabetes to ask whatever questions they have about the life with diabetes experience. The goal is to strengthen our community, educate others, and contribute to a culture of empathy. Check out #AMAdiabetes to see the variety of responses to questions, taking note that, as always, your diabetes may vary.

So feel free to ask away.  Ask me.  Ask Chris.  Ask others.  Ask yourself.  Be all ask-a-rama all over the place and let’s learn from one another and educate together.

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