Category Archives: Events

Friends for Life 2019

July 24, 2019 – 10:11 am

For many of us living with diabetes, being together and supporting one another through the day-to-day grind of a chronic condition is what makes us feel like we have meaning.

The notion of that statement was on full display last week at Children With Diabetes’ 20th annual Friends for Life event in Orlando. Young and old, newbie and veteran, all took turns sharing (both lterally and figuratively) and supporting one another.

I was at Friends for Life as a member of CWD’s IT team, helping to set up projectors and sound in rooms, and getting speaker presentations ready to go. Full disclosure: Children With Diabetes paid for my accommodations so I could work on the IT team at FFL. All opinions are my own.

When I think about it, I’ve probably been to four or five out of the last six or seven of these gatherings. But… I’ve never been there as a participant. I’m always working. First it was MasterLab a couple of times, in and out in a day or two. Then I manned the DPAC booth in the exhibit hall for a couple of years. Now, IT and AV tasks.

I say this so you’ll know that my observations are from someone who didn’t attend everything, or really anything, but watched as people who did experienced their best week of the year.

This past week, I saw kids happily run from place to place with smiles on their faces, knowing that no one was going to try to stop them from what they were doing because of their diabetes.

I watched teenagers as they learned to grow into bigger, better versions of themselves, knowing that they will have support from lots of friends and family along the way.

I saw a meeting room packed with people learning about DIY looping, and then participating in a looping workshop that was so popular its time was extended, and the next session, scheduled to take place in the same room, was moved to accommodate the effort.

I saw passionate advocacy sessions led and attended by people who want so much to make a positive impact for everyone living with diabetes, and to teach and learn how to do so.

I witnessed hugs and handshakes. Side conversations and inside jokes. The deep sighs from first-timers who are just starting to rein it all in, and the knowing support from veterans who have been there, and then some.

Behind the scenes was a dedicated staff of individuals, working registration, as room captains, in Sports Central, on the IT team, and handling a number of other roles with empathy and service toward all those attending.

Altogether, it made for an outstanding week of education, networking, and social events that isn’t seen anywhere else in our community. That’s why Friends for Life is so special.

For my part, I didn’t get to spend nearly enough time with anyone newly met or that I already knew. Weeks like this have a way of just flying by. To anyone who’s time was short with me, I’m sorry… I’ll try to do better next time.

For so many kids and adults who have diabetes in their lives, Friends for Life is their safe place. Their unique environment. Their hallowed ground.

Eleanor Roosevelt once said, “The future belongs to those who believe in the beauty of their dreams”. A couple of decades ago, there was a dream, and for the 20th time, it came true, for everyone at Friends for Life Orlando.

By StephenS | Tagged , , | Comments (1)

Communities exist everywhere. Including right here at home.

December 6, 2018 – 10:11 am

I do a lot of speaking these days, formally and (mostly)informally, about our wonderful diabetes community. I talk about the support, the empowerment, the innovation, and the kindness I’ve experienced and that others encounter after getting that horrible diagnosis.

I got a chance to talk about that before another great community this week. Hadassah of Greater Baltimore is part of a larger Jewish women’s organization that, among other things, promotes the health and well-being of women. Hadassah, and Hadassah of Greater Baltimore, is a huge community of women who work tirelessly in supoort of their common causes. Sound familiar?

So it was interesting to me to see these two communities… Diabetes and Hadassah, coming together for an hour of understanding and information sharing.

I got a chance to educate the group about diabetes, of course. And as you might expect, there were a few people in the group who already have diabetes as a part of their lives. It was interesting to have them ask questions or point out some piece of technology they’re using, right before I got to the part where I discussed exactly those things.

It was also interesting to experience their genuine interest. There was a lot of discussion back and forth, many questions, and a fair amount of discussion after my talk.

This all took place about five minutes from my home. So, you might say, I attended an event in my home community, where I introduced people to my diabetes community, and I was introduced to a whole new community.

Me and my friend Linda, who introduced me to Hadassah of Greater Baltimore


In the final analysis, it went very well. When you’re passionate about your subject matter, you don’t really worry too much about how you’ll do. You just try to remember to shut up once in a while so people can speak and ask questions.

What I left the group with is what I’d like to leave you with right here. There are communities everywhere, uniting around issues important to them, and delivering a positive impact to the people they serve. Find your community, and help make a difference.

By StephenS | Tagged , , | Comments (3)

Friends for Life Falls Church: A weekend well spent.

October 23, 2018 – 4:46 pm

The last conference of the year (for me, anyway) is complete. Last weekend marked another terrific Friends for Life event in Falls Church, Virginia.

I went into this one not having a pre-defined role (i.e., not volunteering), which was nice because I could attend sessions and catch up on things I didn’t really know much about, or didn’t know enough about.

That included learning more about DIY artificial pancreas options from OpenAPS guru Dana Lewis. More on that later.

There was an opening keynote, presented by Stewart Perry and George Huntley, who just like during the DPAC Champions Policy Training Meeting a few weeks ago, talked about the various forces behind why insulin is so crazy expensive here in the USA. Everyone was on the edge of their seat.

The bulk of the sessions took place on Saturday, including three super DPAC-led sessions: one on current Advocacy Hot Topics, one on Storytelling with Facts, and one on State Advocacy.

The hot topics sessions (tag-teamed by Christel Marchand Aprigliano and Leyla Mansour-Cole) included a recap of some actual wins from this year (CGM data on smartphones for Medicare recipients), and advocacy items to keep our eyes on in the coming year. It looks like 2019 will include focus on a comprehensive vision bill for PWDs, and the re-ask on H.R. 5768 and S.B. 3366, which I wrote about earlier.

After hot topics, Christel and Leyla delivered an interactive session called Storytelling with Facts, which is focused on how to bring your own story into the conversation when advocating for an issue before elected officials and policy makers. At the end, we used what we learned to craft a pitch and deliver it to others in attendance. It’s a great session for learning exactly what to say and how to say it, and some of the pitches were absolutely stellar.

I missed most of the DPAC Champions State Edition with Leyla, though I was able to pop in at the end and add my two cents for dipping your toe in the advocacy waters at the state level. In some states, it’s super important.

The first part of that time I was in a different session, led by Leigh Davis Fickling, who I had read a lot about, but never seen in person. It was titled Your Legal Rights as a Person With Type 1, and in it, she provided a wealth of information on what rights a person like me has and doesn’t have, at the primary school level, at college, in the workforce, and more.

Some of what was in the session I knew, but had honestly forgotten. For that reason, it was a good refresher. But I also learned a lot that was new to me too. Leigh Davis Fickling knows what she’s talking about, and I was glad I stopped in for this one.

And that brings me to Sunday, where there were two sessions featuring Dana Lewis. The first was What You Should Know About DIY Closed Looping, and the second was a free flowing discussion on looping including Dana and other attendees who are actually looping themselves. In both of these, people in the room who are not looping (like me) were able to have all their questions answered by experts in the field (hint: the experts are the ones actually doing it).

Dana Lewis is another person who I had not met or seen speak before, though many had written about her and told me how great her presentation is. I was not disappointed. For more on her important work, go to
OpenAps.org

The conference ended with a keynote from Ed Damiano, giving an update on the iLet, or Bionic Pancreas, that he and his team are working on in Boston.

As usual, the weekend included adults and families, newbies and returnees, lots of hellos and goodbyes, laughter and tears. I’m grateful to the Children With Diabetes staff and volunteers for putting together a weekend like this and bringing it so close to home. I don’t usually talk about this, but the big Friends for Life event in Orlando is a tough sell budget-wise, so I’m really glad I can still get the FFL experience in a more affordable package.

In the end, Friends for Life Falls Church helped me continue learning from advocates and experts, and continue to be inspired by adults and children who bravely live their lives in the face of a chronic condition that never leaves them. A weekend well spent.
 
 
There will be more Friends for Life events: this weekend in Scotland, and the next weekend in Ontario Falls, Canada. In 2019, in addition to the annual conference in Orlando in July, Friends for Life will go to Seattle at the end of March. They will be back to Falls Church in early October next year, back to the UK at the end of October, and back to Niagra Falls in early November. To find out more, go to
ChildrenWithDiabetes.com/activities/

By StephenS | Tagged , , | Comments (1)

Dreamer stage.

September 6, 2018 – 10:11 am

I’ve been reading, with great envy, about diabetes conferences on other continents lately. Specifically, the recent Australasian Diabetes Congress in Australia, and the upcoming EASD (European Association for the Study of Diabetes) conference in Europe.

Both of these appeal to me because they feature patient presentations and social media events either as part of the event or coordinated around the event. But there’s also an appeal to me because these gatherings are continental, and it makes me wonder: Why can’t we do something like that here? In North America?

Why can’t there be a North American Diabetes Congress? Why can’t there be a Pan-American Diabetes Summit?

I know what you’re thinking: Too much money! How are you going to get patients there? What do you think you can cover? What about meeting space, exhibit space, agendas, speakers?

Okay, I’m not an event organizer. But I can ask… why can’t this be done? North America, and the Americas including Central America and the Caribbean and even South America, cover a widely diverse group of people. Our challenges to get access to care, drugs, devices, and education are in many ways unique to our hemisphere.

There are also unique voices in each country that we can all learn from. They’re writing, broadcasting, and advocating in ways that I see but don’t completely understand yet. I’d like to see if some of what they do can translate to positive advocacy here too.

Right now, I’m only looking at the positive aspects of something like this. So don’t dump on me about how it’s impossible, companies won’t contribute, if companies do contribute I’m a sellout, people won’t be able to travel far, or the logistics are too difficult.

I’m still in the dreamer stage. I know this could be very good, even if I only have a rough idea of what “this” really is. So don’t harsh my mellow.

I refuse to think that we should be separated by distance or resources. I believe there is a lot we can learn from each other. I want to think bigger than diabetes type or country or age or language.

Why can’t we do it?

By StephenS | Tagged , , | Comments (4)

#AADE18 – So Much to Do, So Much to Learn

August 21, 2018 – 10:11 am

I’m back in this space after attending the annual meeting of the American Association of Diabetes Educators. This year’s conference was here in Baltimore, which means 1) I was able to attend AADE for the first time, and 2) I was able to save a lot of money, which is a pretty big deal for me right now.

Diabetes educators are a unique group: smart, organized, caring beyond what I’ve seen from other medical professionals, and curious to the point of amazement at the things that are changing the diabetes landscape. I know, they’re all working to get their CE credits. But if that’s all there was to it, I wouldn’t have seen multiple people line up after each presentation to ask questions and make comments.

I was fairly busy over the weekend. I participated on the panel during the #DSMA Live event that happened on Thursday night, along with (of course) Cherise Shockley, Scott Johnson, Jasmine Gonzalvo (winner of AADE’s 2018 Strategic Initiative Award), and #DSMA veteran and CDE Chris Memering. But that was just the beginning.

Friday, I was fortunate to sit on a panel discussion called Listen and Learn: The Perspectives of a Panel of People With Diabetes. Nicole Bereolos moderated, and I sat at the table with Christel Marchand Aprigliano (CEO of DPAC), Anna Norton (CEO of Diabetes Sisters), and Shelby Kinnaird (writer at the Diabetic Foodie blog). I don’t know if I added much to the conversation, but I’m honored to be part of any conversation including these accomplished individuals.

Friday evening, I accepted an invitation to be part of something sponsored by One Drop, which provides a management platform for People With Diabetes. The One Drop Salon was the first of its kind, a conversation over dinner between diabetes educators, nurse practitioners, diabetes advocates, and representatives of One Drop. It was a super evening, and for the record, One Drop hopes to host more of these in the future. I can share that while the conversation was lively, there was no One Drop marketing pitch, and throughout the dinner, the conversation remained on diabetes and how best to serve our individual communities. Disclosure: One Drop paid for my dinner that evening. All opinions, as always, are my own.

That brings us to Saturday. Saturday morning, the proceedings started at 7:30 a.m. (on my vacation) with a video project I was lucky to be a part of. The video was put together by Mytonomy, a cloud-based diabetes management tool for PWDs and care teams. It focuses on the #LanguageMatters theme I and others have been talking about for a while. It features at least a couple of people you might recognize, like Renza Scibilia and Grumpy Pumper Chris Aldred. And me. It went over well, and it was surreal seeing my face (with every flaw) and the faces of my online friends on multiple huge screens in front of a couple thousand people. Again, a huge honor, and I can’t thank Mytonomy and Deborah DeMore Greenwood enough for making this happen and including me. Disclosure again: I was part of the video, but in case you were wondering, I did not receive anything in return for my participation.
Here’s a look:

Maybe my favorite session on Saturday was titled “You Built a What?!” Preparing for Conversations about Non-Commercial Automated Insulin Delivery Devices. Two Certified Diabetes Educators using DIY artificial pancreas systems! They covered the various options, the nuts and bolts of do-it-yourself closed loop systems, and cost. One of the presenters addressed concerns about safety by relating her own life with diabetes in the 1970s, peeing on strips to measure blood glucose and using regular and NPH insulins. Compared to that, she said, using a DIY closed loop system can be much safer.

Sunday, I got to see Cherise again, along with Hope Warshaw, Christina Roth (CEO of College Diabetes Network), Amy Tenderich (Editor-in-Chief at Diabetes Mine) and David Edelman of Diabetes Daily. Their session was The Educator’s Role in Advocating Peer Support: Why, When, and How?. Each member of the panel talked about online peer support and what it means for the overall health and well-being of People With Diabetes.

As you can probably tell, AADE has done a fantastic job of staying relevant, embracing the latest in diabetes news, technology, and peer support. Monday’s keynote included Anna Norton, Michelle Litchman, and Liz Beverly, and Mary De Groot, and focused on Peer Support. Imagine all those diabetes educators soaking up all of the knowledge on peer support and what it means to you and me.

I sandwiched in a couple of stints in the Twitter Lounge in the exhibit hall on Friday and Sunday, where I was able to sign a few people up to Twitter and give them pointers on engaging with our community.

Yes, it was a very full weekend plus. Next year’s AADE conference will be in Houston, and I hope to be there. But for now, I can be happy knowing I met some people I’ve known online for a while but never met in person. I spent time with friends I hadn’t seen for a while. I learned a lot (that I can’t include in this already long blog post). I’m grateful to the people who allowed me to participate in their initiatives. I was honored to be able to share my feelings on a variety of subjects.

There was much to do, and much to learn. I go back to work today feeling fulfilled.

By StephenS | Tagged , , | Comments (2)
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