Tag Archives: MasterLab

It’s about the people.

July 13, 2016 – 9:08 am

Like I mentioned before, last week was a very busy week. Part of that week meant being busy in a very pleasant place. Mixing work with pleasure? Okay, I’ll do that.

I spent last Wednesday, Thursday, and Friday working at the DPAC booth at the annual Children With Diabetes Friends for Life event. This is the mother of all diabetes gatherings, with thousands of People With Diabetes and their families descending upon Orlando for nearly an entire week. This was my first experience being there for more than just a day, and admittedly, my experience was not the typical conference-goer experience, but here are some things I experienced and noticed during my time there.
 
 
I arrived on Wednesday morning, about an hour or so after MasterLab began. MasterLab is a one day advocacy workshop presented by Diabetes Hands Foundation. There were a number of presentations, and I hope all of the attendees got a lot out of them, or at least were able to grab a nugget or two that they can use in their advocacy efforts in the future.

What I experienced: I saw many advocates from many countries who were very much into the focus of the day, which was to advocate for everyone living with diabetes. It’s sad to know that diabetes advocacy is needed elsewhere in the world, but good to know that there are stellar advocates living in Columbia, Mexico, Puerto Rico, the UK, and other countries.

What I noticed: Much of the talk was USA-specific, which risks alienating those attending from other countries, but I’m hoping this is a temporary “we’re learning how to do this” kind of thing.
 
 
Diabetes Patient Advocacy Coalition is a remarkable resource for people living with and affected by diabetes. We were able to garner many signatures for the Dexcom G5 labeling petition to the U.S. Food and Drug Administration, which will be holding a hearing on July 21 to discuss the issue. Our goal was to get 5,000 signatures on the petition. As of right now, we’re nearing 6,000. Yay Diabetes Community! The diabetes community was able to rally to this so quickly thanks to the fact that DPAC makes it so easy for someone to add their name and voice to the issues that mean the most to us. I urge you… take a hand in your own diabetes advocacy by going to diabetespac.org and signing a petition or sending an e-mail. We do best when we speak for ourselves. Tell your story. Tell it from the heart.

What I experienced: Despite being “on stage” (to use a Disney term) most of my time there, the exhibit hall was punctuated by bursts of activity before and in between conference sessions, then amazingly slow lulls once the sessions were, um, in session. I’m not sure how I did for DPAC, but I hope I did well, and I was happy and honored to do what I could.

What I noticed: There is still an overwhelming desire for knowledge among the diabetes community, especially its newest members. During my time manning the booth, I met a pair of first-time attendees, grandparents of a young person diagnosed not too long ago. As we discussed our diabetes lives (like you do), and they expressed some of their concerns, they must have seen the “everyone’s been through this phase” look on my face. One of them looked at me and said, “You’ve been living with this for 25 years… we want to know… tell us!“, as only a grandparent can express it. These two wanted to know everything about insulin, devices, burnout, you name it. They were in the right place that week to learn about all those things. And that’s not the only conversation I had like that while I was there. This is one of the many reasons why we need DPAC.
 
 
Finally… the one-on-one, human interactions with people are what make these gatherings special. I’ve said that many times after events like this, but it is an undeniable fact. The Diabetes Online Community has been vital in bringing together people from everywhere who have felt alone living with diabetes. Especially people like me. But the internet can only do so much. While my social media connections helped me crawl out of a depressive shell many years ago, the interpersonal connections have helped me stand tall, and build constructive and meaningful relationships that will hopefully last a lifetime. It’s that much more.
FFL16
What I experienced: The feeling that no matter how big my diabetes circle of friends is, there’s always room for more. It was great seeing existing friends like Karen and Bea and Scott and Mike, but it was also wonderful to finally meet Cara, and meet Tina, and meet Nia (who lives in my city!), and meet Becky, and Trip too. And almost instantly I want to hang out with these people, and advocate for them, and protect them. That feeling comes from actually meeting people and getting to know them at a level that few are capable of, because the one thing you have in common is the one thing that bonds you tightest to each other.

What I noticed: I was not the only one who noticed the absence of Medtronic at FFL. Every other pump manufacturer was there. Dexcom was there too. There are probably reasons for this which I’m not privy to, but many people noticed, and their speculation of why Medtronic was absent covered a broad spectrum of opinions. I’m not sure it matters why Med-T didn’t make it, and maybe it was okay that they weren’t there this year. But to use the word again, the absence of Medtronic allowed others to form their own opinions about products and corporate behavior, whether those opinions were accurate or not.
 
 
Because I spent most of my time working in the exhibit hall, I can’t say that I had a typical conference attendee experience. But because of these moments and others, I did have a typical, wonderful personal experience during my three-plus days in Orlando. Thanks to DHF for my invitation to MasterLab, and a special thank you to Diabetes Patient Advocacy Coalition, Christel Marchand Aprigliano and Bennet Dunlap, for the opportunity to put my mouth where my motivation is. Or something like that.

All of this reinforces the notion that it’s not about the disease, it’s about the people living with the disease. The idea that if you fall into a hole, someone will jump in to help you. Because they’ve been there before, and they know the way out. Our lives don’t get easier with our diabetes diagnosis. But knowing that others are walking the same stretch of road, right alongside us, makes us closer.

By StephenS | Posted in Events | Also tagged , , | Comments (3)

A very busy week.

July 6, 2016 – 9:08 am

Wow, I am right in the middle of a very busy week. Sometimes, things just happen all at the same time. This is one of those times.

On Friday afternoon, I began a week long vacation, which, if you think about it, is really a nine day vacaton. At least for me it is. So… do you think I would rest up, take it easy, get a little extra sleep? Yeah, right.

On Friday afternoon, I came home from work and climbed into a rental truck. We moved our dining room furniture from Maryland to Ohio. So we drove part of the way Friday night before finding a hotel to crash in before driving the rest of the way on Saturday morning.

Saturday, we wound up on Maureen’s sister’s farm outside of Cincinnati, unloaded the furniture, and spent part of a wonderful day. We slept overnight, had breakfast on Sunday morning before dropping off the rental truck, and then headed back east. We drove all the way back Sunday, which means we covered nearly 1200 miles in a little more than 48 hours.

Wait… I’m not finished.

Monday was the 4th of July, America’s Independence Day, which is a national holiday, unless, of course, you have work tasks that no one else can do for you, so you spend part of said holiday actually working. On your vacation. Greeeaaaatttt….

Tuesday went by quickly. Oh, I should mention: bad, bad low in the middle of the night Monday night. Everything turned out okay in the end, but I got very little sleep again. This vacation thing is not working like it should. Anyway, on Tuesday morning, I ran my last training run before my upcoming 5K. More on that in a minute. I also had laundry to do, and I needed to pack. I made a super flatbread pizza for dinner. Too much information?

Wednesday begins the best part of the week. I’m headed to Orlando, where the annual Children With Diabetes Friends for Life event is taking place. I’ll be sitting in on part of MasterLab Wednesday. MasterLab is a place for diabetes advocates to come together in a one-day workshop to learn about how to amp up our efforts for better access, better drugs, and better costs for everyone living with our disease. Disclosure: Diabetes Hands Foundation has invited me to attend MasterLab. They are picking up the tab on my registration. All opinions are my own.

After MasterLab, it will be my honor to head to the exhibit hall, where I’ll be working the booth for Diabetes Patient Advocacy Coalition. If you’re in Florida, please come by and use the DPAC easy button to add your signature, send your e-mails, and up your diabetes advocacy in no time at all. If you’re not in Florida this week, it’s okay. Just go to diabetespac.org, and you can advance the cause right from your own home. Thanks!

I’ll be in Florida Wednesday, Thursday, Friday, and Saturday morning before heading back to Baltimore. But wait… that’s not all!

Sunday will be my 5K, the event I’ve wanted to get under my belt for two years. My comeback event, and even though I’ll be slow, I’m really looking forward to it. I may be tired, but I’m doing it.

Monday morning, I’ll be back at work again for the forseeable future.

Here’s how I look at it: I’m in the middle of a very busy week, and I’m not going to get much rest during my vacation. But I’m crossing a lot of things off of my list, so the next time I get some time off, hopefully, I can spend some time resting and relaxing.

And don’t feel sorry for me. I chose to do all of this, at this time. I could have said no to any or all of it. But I didn’t. Because I didn’t want to. My life is full of a lot more fun and adventure today than it was back when a week off meant a week at home sleeping late and watching TV until the wee hours of the morning. I’m happy to serve the community through DPAC, and I wouldn’t trade my life right now for anything. Except maybe a fully functioning pancreas.

I’ll catch up with you next week! In the meantime, you can follow the goings on in Orlando by following the hashtag #CWDFFL16.
 

By StephenS | Posted in Advocacy | Also tagged , | Comments (2)

Golden Ticket!

June 24, 2015 – 9:18 am

You may have seen this already… but just in case you haven’t, take note:

Thanks to Medtronic there is an extra ticket, including travel expenses, available to the two-day MasterLab advocacy workshop in Orlando in just about two weeks.
ML
So… for all of you who ask, “How come the same people always go to these events?”… Heeeeere’s your chance.

Even though I already promised I wouldn’t apply for any scholarships this year (I won’t go into that again), I almost jumped in on this too. But in the end, it seemed too much like a scholarship, and I want to be true to my promise to give someone else a chance this year.

Do you want to go? CLICK HERE for the link to the short survey. There’s a lot to read, and you have to be ready to travel if selected, but what an opportunity!

You have until Sunday, June 28 to submit your responses. After that, no complaining, okay?

I know I’ve said this before, but it’s worth saying again: MasterLab was an transformative experience for me, and it can be for you too.

Last year was just a day. This year, two days, July 7 and 8. Learn… grow… experience… MasterLab.

I will soooo miss being there. I will be thrilled for you if you are there holding the golden ticket.
 
 
 

By StephenS | Posted in Advocacy | Also tagged , , | Comments (2)

#MasterLab: Advocacy and Movement.

July 10, 2014 – 9:34 am

MasterLab

I was fortunate enough to attend the Diabetes Advocates MasterLab in Orlando last week. I was there thanks to a scholarship provided by Diabetes Hands Foundation. My thanks to everyone who made this event possible, and made it possible for me to attend.
 
 
This MasterLab thing… it was great, it really fired me up to do more with my advocacy, and it even boosted my morale.

Now what? And by extension, you may be thinking, “What do you want me to do?”.

For me, advocacy is a very personal thing. I think it should be for you too.

My only advice: Don’t let the word handcuff you.

I try to think of advocacy with a little a, rather than a big A. I don’t give the word too much influence over me. Earlier in my life, I was intimidated by the word. That intimidation caused me to do nothing at all, which doesn’t help anyone.

But not any longer. Not because I suddenly got braver. No… now I try to concentrate on the things I’m capable of focusing on. If my efforts need to start small, then grow later, okay. I simply try to do what I can, when the need arises. If that eventually turns into full-fledged Advocacy with a capital A, then great. If not, I’ll find something else to get involved in. Not everything is a roaring success.

But… some things are. I not only want to be a part of those successes. I want to help make them happen sooner.

Here’s how you can take a tangible step toward joining a movement, all from the comfort of your own electronic device:

Go to the Diabetes Action Hub now. Take the Diabetes Advocacy Survey (you’ll complete it in less than 5 minutes). Add your information to the database. Help build a strong group of supporters that will be part of a movement, allowing us all to help make our cause bigger and stronger. Then check out the rest of the Diabetes Action Hub to find out how you can help right now. And don’t forget to visit often for updates and calls to action on issues that mean the most to us.

Do you know what has happened to me over the past two and a half years? I’ve gotten involved from time to time in efforts designed to help people. I haven’t always had the time to throw myself fully into whatever need arose, but often I was able to do at least something. What that means is that unlike two and a half years ago, I am actually doing something.

There is a difference between advocacy and a movement. Advocacy is being in someone’s corner… I’ve got your back. I’ll stand up for you, whether or not you can stand up for yourself.

A movement is when many people take tangible steps that have a positive impact for others. Those tangible steps are often small steps. But in big enough numbers, they can move mountains. One big effort by one person is significant. Many small efforts toward the same goal create a movement that no one can ignore.

We need more advocates. No question about it. We need more agitators and litigators and innovators. If that’s you, please step forward. I’ll stand with you and support you.

But I think what we’re missing is a movement. A movement that comes from an army of people that numbers in the hundreds of millions worldwide, who are living with and affected by diabetes. An army of people who are willing to say “I can’t do everything, but I can do something, just let me know”. An army of people who are just trying to do what they can, when the need arises. Because life, and the quality of life, hangs in the balance.

Things have improved tremendously for People With Diabetes in the past few decades. But we’re still an underfunded, misunderstood, red-headed stepchild of a condition. Whether you think five people calling your congressperson is a movement, or whether you think 500,000 people marching on the capitol is the correct definition of a movement, the fact is we need both you and me to be able to reach those numbers. We need you and we need me and we need your family and we need the people at your local coffee house and we need the Congress and the Senate and the President of the United States and if need be, the Supreme Court to get on the steamroller that’s just starting up right now. I look forward to the day when we’re no longer talking about starting a movement, but rather talking about the movement we started.

Are you with me? Take the Diabetes Advocacy Survey now.
 
 
 

By StephenS | Posted in Advocacy, Events | Also tagged , , , | Comments (3)

Room full of icons.

July 9, 2014 – 10:12 am

MasterLab

I was fortunate enough to attend the Diabetes Advocates MasterLab in Orlando last week. I was there thanks to a scholarship provided by Diabetes Hands Foundation. My thanks to everyone who made this event possible, and made it possible for me to attend.
 
 
This is about the experience. Showing up at an event like MasterLab, taking place in the middle of the Children With Diabetes Friends For Life conference, means a lot of potential D-celebrity sightings. At the same time, I’m there for a reason, and it isn’t to be a fanboy (I really hate that term, but it’s quite descriptive in this case).

Knowing I was going to see some amazing writers and diabetes advocates that I had admired from afar but hadn’t met yet definitely had me pumped up as I made my way to Orlando. I can’t say I felt intimidated. I’ve been in rooms with important people plenty of times. I just try to be as nice, as polite, and as kind as I can, and you’re either going to talk to me or you’re not. No big deal. My worry is always that I’m going to meet someone who thinks I’m annoying, or that I’m keeping them from something they feel is really important. If I did that to you last Wednesday, I’m sorry. That was not my intent.

The real truth is that for me, attending MasterLab was an emotional experience. On a number of levels. Including and especially on the personal level. So please allow me a moment to get all fanboy link-a-palooza on you. I may not cover everyone I encountered here, but that doesn’t mean I don’t value you… it only means my memory sucks.
 
 
Before I came down to Orlando, I knew that Manny Hernandez was a big deal. It wasn’t until I actually met him that I realized the magnitude of his personality. We’ve got a good person helping to lead the charge.

I did meet two people I hadn’t heard of before Wednesday. These two people sat at my table. This is the only photo I got of any of the special people I met during MasterLab.
DSC01624

Mike Ratrie is a media publisher by trade. He’s also been a Type 1 for forty years or so. He’s smart and quick-witted and fun to talk to. During one of the breaks, we went across the hall and gave blood for celiac screening and other testing that the TrialNet folks were doing. Sia Figiel is originally from Samoa. She’s living with diabetes, and she’s lost over 100 pounds in the past year. Lately, she’s been participating in a CNN-sponsored project called Fit Nation. She’s one of six people chosen by Dr. Sanjay Gupta to train for a triathlon in September. Each participant is dealing with a serious health condition. Sia’s story is amazing, full of bravery and resilience. She sounds like she’s doing great. Here’s a video of her and the other Fit Nation participants from back in February (Sia appears near the end– sorry, I couldn’t get it without the ad at the beginning).

Christel Marchand Aprigliano reminds me of my mother-in-law (some fanboy comment, eh?). Really, I mean that in a good way. My mother-in-law was a good and kind soul who was always glad to see you, and always made you feel like the most important person in the room. Everything good about Tish is everything I learn from and admire about Christel.

Another writer I enjoy reading is Sue from Diabetes Ramblings, who’s living with Type 2. I was really happy to meet her since she was the one who wrote me nominating the daughter of a friend for one of our Champion Athlete With Diabetes medals. I don’t think I saw her not smiling whenever I saw her. Something like this has that kind of effect on you.

Another Type 2 present was Kate Cornell, from Sweet Success. As we speak, Kate is collaborating with Laddie Lindahl at Test, Guess, and Go on a series of Type 1/Type 2 conversations that are already leaving me on the edge of my seat. I think this event really got Kate’s advocacy mojo going. It will be interesting to see where it takes her.

When I was getting set up in the meeting space that day, I was looking for a wi-fi password so I could do some live tweeting from the event. The people at the next table appeared to have everything up and running, so I decided to ask one of them if they had a password. I tapped on the shoulder of the person with their back to me, and Meri Schumacher turned around. Umm…. Hello Icon. I don’t generally read blogs written by parents of children with diabetes, but Our Diabetic Life is something I read often. Simply put: Sometimes the written word moves you, even if you don’t have kids.

Speaking of awesome D-parents, Tim Brand came up and introduced himself, and unfortunately for me, I didn’t spend enough time talking to him. I always like to hear how people got to where they are at a gathering like this, and I would have liked to hear Tim’s story. Next time I hope. In the meantime, I’ll keep following his tweets and reading his excellent blog posts as he continues to advocate for the two of his four children who are living with diabetes.

When I found out Alanna Swartz was there, I knew I had another person to add to my must-meet list. Alanna is making a career out of outreach and advocacy for people like her and me by serving as outreach manager for JDRF Nova Scotia. Her blog is like many others… when you read her story, you sit up and say “me too!”. I look forward to reading about her for a long time to come.

It was a very nice surprise when I met Briley Boisvert. When I was her age, I thought I was so smart and creative. But Briley is so much smarter and more creative than I could have dreamed about then. I’m kinda jealous, to be honest. That phrase “I wish I knew then what I know now”? That’s what I think of when I read her blog.

And Jess from Me and D said hello! I think she’s got one of the biggest smiles I’ve seen in a long time. If you want to read what it’s like to really live on the diabetes front lines, you should visit her on the web. She tells it honest and with feeling.

Like everyone else, I enjoy reading Heather Gabel’s blog entitled Unexpected Blues. To my chagrin, I was only able to say a brief hello. Maybe my biggest regret of the day was not getting five minutes to sit down and listen to the voice that puts all those great words on my screen.

I was negligent last August when I attended the DSMA meetup in Philadelphia. I knew Sara Nicastro was in the room, but I didn’t say hello. I’m glad I was able to right the wrong this time. I’m also glad that Sara is so patient with me, because it seems like every time I’m involved in a project with her, I always screw up something. Hopefully, I’ll get the June Best ‘Betes Blogs post right the first time.

One of the people I really wanted to meet that day was Kim Vlasnik, writer of the first diabetes blog I found online. When I found it about three years ago, I was in a deep, very not happy place. It was really important for me to tell her how much it meant to me that I found her blog, what it touched off, and that who I am today is a direct result of finding her online back then. That was an emotional moment for me, though I think I hid it well. Oh, and later in the day, I was able to duck into the exhibit hall and see the You Can Do This Project booth. Another emotional moment for me. And I picked this up:
DSC01628
I ain’t takin’ it off either.
 
 
There were also many whom I had met before and were thrilled to see again in this space. People like Karen and Cherise and Kelly and Scott and Kerri and Christopher always light up every room that they enter.

What’s really nice (and yes, I get emotional about this) is the feeling of acceptance I felt that day. With acceptance, I don’t have to have my guard up all the time. I could physically feel the stress going away as the day went on.

So thanks for letting me get all this out. I’m lucky, and grateful that my D-associates are a brilliant, diverse, and accepting crowd. They make me want to be just like them.
 
 
 

By StephenS | Posted in Advocacy, Diabetes | Also tagged , , , | Comments (7)
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