Skip to content

Posts tagged ‘advocacy’

What is a Diabetes Advocate?

Last night’s #dsma chat was a terrific one, focusing on how people in the diabetes community define “advocacy.” I wanted to summarize it here (at least the parts that resonated for me) because it could serve as a catalyst to inspire.

[For information on what the #dsma chat is, click here. And to learn more about connecting with people with diabetes on Twitter, click here.]

The community shared their advocacy “origin stories:”

And then we compared notes on what we’re most passionate about:

… segueing into reasons why that topic is something that touches our advocacy hot spots (sounds sassy …):

But of course, the road towards getting something done is often paved with obstacles. For many of the folks on the chat, “fear” played a huge role in holding us back:

So how do we, as the “diabetes ONLINE community,” remove the Internet component and bring advocacy offline?

Not everyone has to be an advocate for diabetes, and not every advocate raises awareness in the same way. But every voice matters, and no effort is too small. How do you advocate for diabetes? And how can we, as a community, help move your efforts forward?

Medtronic Diabetes Advocate Forum: Meaning Trumped Marketing.

A few weeks ago, I was invited to join some of my advocacy colleagues for a meeting in Los Angeles, CA at the Medtronic Diabetes headquarters.  This event was put on by the teams at Medtronic and Bayer, and they covered travel, lodging, and expenses for attendees.  (Disclosure out of the way.)  The agenda included “interactive sessions on the latest diabetes technology, more time to pick the brains of our executives, and a long discussion about diabetes social media advocacy.”  The meeting took place this past Friday and Saturday.

The beginning of the summit was admittedly not my favorite, but felt like a marketing necessity.  There were presentations by Katie M. Szyman (President, Medtronic Diabetes) and Marc O’Donnell (Vice President, Regulatory Affairs at Medtronic) that, despite the accessibility of the presenters and how they made themselves available to a group of advocates, felt somewhat sales-pitchy and on occasion, defensive.  I understand that sales need to be pitched and regulatory discussions need to be carefully had, but hearing about the new Enlite sensor or hearing about people with diabetes talked about in marketing terms (for better or for worse) is not my personal mission.

Even though I’d been invited to the previous two summits, I wasn’t able to attend due to work, so this year was my first time.  The fact that the team at Medtronic kept me on the invitation roster spoke volumes to me, because they didn’t let my existing competitor relationships [disclosures] preclude me from being part of an advocacy discussion.  Representatives from Medtronic encouraged attendees to voice concerns of all kinds (good and bad) and didn’t shy away from difficult conversation topics (like “Calling the 530G an ‘artificial pancreas’ was misleading,” and “Your sensor hasn’t been a good fit for me.”)

But meaning quickly trumped marketing, and that remained the theme of the event.

What cemented this meeting as one of the most powerful ones I’ve attended in some time, was the discussion lead by Dr. Francine Kaufman.  When she started talking about the needs outside of our privileged bubble, highlighting how diabetes is managed in different countries, a heavy cloak of awareness and responsibility seemed to fall over the attendees.  Boxes of Kleenex were passed around as we were reminded, as a group, how “perspective” is defined by “access.”

What happened later in the afternoon was nothing short of amazing, when the room full of advocates took the conversation that Fran started and owned it.  A discussion about Spare a Rose efforts for 2014 became an exercise in implementation as people brought their advocacy strengths and assets to the table and offered them up.  All voices were heard and a group oft-frustrated by a lack of forward movement at meetings like this took action to ensure that more action would be taken. In short, a plan was needed and a plan was put into place, with details (and THANK YOU’s) to be issued in the coming days.

This summed up the entire summit for me, in one Tweetable-bite.

It was a privilege to be in the room, for many reasons, but largely because it was a privilege to try and make the voices heard of those who weren’t in the room.  It can be scary to speak up.  It can be intimidating to try and make a difference.  And the endless threats of rules and regulations can keep ideas from blooming out of fear.

But honestly?  We should fear inaction more than action.

Thanks you to Medtronic and Bayer for hosting these discussions, and to the DOC for having them.

So Much of the Thanks.

On the eve of Thanksgiving, I’m thankful.

Thankful for two, daft gray cats who rotate around this house instigating trouble, but who happily curl up on the couch with us at night.   For job opportunities that fill my life with meaning.  For family and family.  For the husband who tolerates, with amazing patience, all of me.  For the all-in hugs that Birdy issues in the morning, with her hair a stratosphere-tickling tangle and feet shuffling, but her eyes wide open, ready to experience everything.

And I’m thankful for access to insulin.  As a person living with type 1 diabetes, I depend on insulin.  Without access to insulin, I would be dead.

But tomorrow, and every day, so many people who need insulin do not have access to it.  The global diabetes community needs our help, and Insulin for Life can serve as the compassionate conduit between those who can give and people with diabetes around the world who are in need.    You can donate through their website by clicking here.


Give yourself another reason to be thankful:  be thankful that you have the opportunity to save a life.

Photo-A-Day: Proud.

Today’s photo prompt is “proud.”

Don't even step.

I’m proudest of my littlest bird.

[the photo-a-day guide is here]

Strip Safely: Taking to Twitter.

(Note that the banner looks like a test strip.  Clever, eh?)

Wednesdays are usually a diabetes-heavy night on Twitter, since it’s the night that the #DSMA conversation takes place (at 9 pm EST – check out the #DSMA webpage for info, and for tips on joining the conversation, click through to this post on Diabetes and Twitter).  Lots of #diabetes and #DOC hashtags happening on Wednesday nights.

So let’s add one more to tonight’s agenda?  YES.

The Strip Safely website offers the following details on what’s at stake, and how you can get involved:

“Please Tweet Congressional leadership and your elected officials, letting them know how important it is for their aides to attend the Diabetes Technology Meeting: ‘Verifying the Performance of Blood Glucose Monitors Following FDA Clearance.’

Click the ‘Tweet about Meeting’ link next to a Member’s name to send a tweet asking them to send a staff aide to the September 9 Diabetes Technology Society Meeting. Not sure who your Representative is in the House? Use this link: http://www.house.gov/representatives/find/

All U.S. citizens, regardless of state, should tweet the Senate and House Leaderships.

Then, please, get creative and send additional positive messages to help the diabetes community build friends in Congress. (Include the hash tag #StripSafely.) Feel free to use this link to our letter for your tweets: http://www.stripsafely.com/?page_id=618

Diabetes isn’t partisan about whose life it impacts. We shouldn’t be partisan in seeking support for safe tools to say healthy.”

If you’re living in the United States, tonight is a night to raise awareness, and a ruckus, about how test strip accuracy, and reliability, matter to all people with diabetes.  Send your Tweets out between 8 – 9 pm EST, before #dsma.  Our elected officials need to know what matters to us, and taking to social media is one way to show them how many of us want – need – to be heard.

Roulette.

I test my blood sugars between 8 – 15 times per day, depending on trends, travel, exercise, food, and other variables.  I correct highs.  I treat lows.  I make a lot of decisions based on these numbers, and it scares the hell out of me to think that they might not be right.

Food for thought.

Looking Back: PWD in the Wild.

As the ladies of Team Sparling prepare for our trip to Orlando for the Friends for Life conference, I’m looking back at a moment from last November, when my friend Renza and I were spotted as “PWD in the wild.” 

*   *   *

We were sitting at the coffee shop having a really nice Melbourne cappuccino (they make the best cappuccinos I’ve ever had in my whole life, with the steamed milk almost like a marshmallow topping on each coffee – amazing), talking about the Australian diabetes social media summit. The weather was sunny and crisp, with plenty of other patrons enjoying their caffeine jolt at the outside cafe tables.

“I guess when I was diagnosed, it didn’t matter much to me that I didn’t know anyone else who had diabetes.  I didn’t really know what diabetes was.  But as I grew older, I wanted to find that community, and that’s where the Internet has helped tremendously,” I said to Renza, talking about the impact of the diabetes community on my emotional well-being.

“And here we are now,” said Renza, laughing as she stirred her coffee.

No joke - Melbourne has the best coffee I've ever tasted.

We chatted on about the Summit the day prior, and what we thought of it. And then our conversation tumbled into our personal experiences with diabetes and pregnancy.  Thinking back on this conversation, we probably said the word “diabetes” at least a dozen times in a ten minute conversation.

Which is probably why the young woman was staring at us from her table, just a few feet away. She was holding her coffee cup near her mouth, but hadn’t had a sip yet.  She was fixated on us.  Her young daughter was drinking a frothy mug of hot chocolate, swinging her feet as the wind caught and tousled her bangs.

“Excuse me,” she said, almost to herself.

My seat was facing her table, so I leaned in and said, “Hello!”

“I couldn’t help but overhear – you both have diabetes?”

Renza shifted in her seat.  “Yes, yes we do.  I’m sorry – were we being too loud?”

The woman laughed nervously, her cup still close to her mouth but merely an accessory at this point.  “No, not at all.  I was happy to hear … I mean, my daughter was just diagnosed with type 1 diabetes a few weeks ago.  We’ve never met anyone else who has diabetes.”  She made a sweeping gesture with her hand.  “And here you both are!”

“Real life people with diabetes, in the wild,” I smiled.

Renza leaned back and extended her hand, introducing herself and explaining to the woman that she had type 1 diabetes and also worked down the street at Diabetes Australia Vic.  “You can come visit us any time you’d like – and I’m at this coffee shop all the time.”  She handed the woman her card.

Thank goodness for the poise and professionalism possessed by Renza.  I couldn’t help myself – I waved animatedly at the girl and her mother and this stream of information passed my lips:  “I’m Kerri and I live in the United States and I’ve had type 1 diabetes for twenty-six years and I have a husband and he and I have a daughter who is two and a half.”

I wanted them to know I was okay, and that even though my life has included type 1 diabetes for several decades, I was still okay; it was a consolidated diabetes life story in one messy sentence, delivered with a caffeinated edge.

“How are you doing?  How are you both doing?”  I asked.

The woman looked at her daughter, who was staring at us.  “We’re good. We’re doing good.  We come to this coffee shop often because they are the only ones who really listen to how I want her hot chocolate prepared.  Her daycare is right around the corner, so it’s a nice place to stop.  They do listen …” her voice trailed off.

“We do know.”

We talked for a few minutes, and the woman gathered up her belongings.  “It was so nice meeting both of you.  Really.  Thank you.”  Her daughter stared at us with her big, brown eyes, the same as her mother’s.

“Our pleasure.  I hope to hear from you.  Please do reach out,” said Renza warmly.

The woman took her daughter’s hand and crossed the street toward the daycare center, her delicious Melbourne coffee still untouched on the table but every single sip of her daughter’s special-made hot chocolate all but devoured.

Follow

Get every new post delivered to your Inbox

Join other followers