Tag Archives: Events

Friends for Life Falls Church: A weekend well spent.

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/

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Dreamer stage.

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?

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

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.

Windy City, here I come.

I’m off to Chicago, Illinois for HealtheVoices18.

HealtheVoices is a gathering of patient advocates. Not just advocates living with diabetes, but advocates living with all kinds of conditions, from cancer to IBD to MS to everything in between.

I attended the first HealtheVoices three years ago, and for various reasons, haven’t been back. This time, I’m going back to a conference that seems much bigger than it was in 2015.

That gathering back in 2015 gave me the inspiration for starting my podcast, and I’m hoping I make the same kind of connections and get the same kind of inspiration that I did then.

Here’s where I tell you that Janssen is paying the cost of travel and hotel for this weekend, and as always, opinions are entirely my own and can never be bought. See previous conference posts to see more about that.

And I promise to share my opinions on HealtheVoices 2018, hopefully some time next week. Until then, have a super weekend, follow the hashtag #HealtheVoices18, and feel free to reach out if you have any questions.

HIMSS18: Diabetes, you’re miles ahead.

Full Disclosure: the Healthcare Information and Management Systems Society allowed me to attend HIMSS18 free of charge. The Society for Participatory Medicine provided a stipend to help defray some of the costs of travel to Las Vegas for HIMSS18. All other costs, and of course my opinions, are entirely my own.

Okay, first things first. This space has been a little quiet over the past two weeks, for two reasons: 1) The power at our home was out for four days, and a day before the power came back on, I left for Las Vegas to attend HIMSS18.

HIMSS stands for Healthcare Information and Management Systems Society, and their annual gathering is the largest health technology conference in the country. How large? There were 45,000 attendees.

The exhibit space covered two floors of a fairly large convention hall. And then a couple more large meeting rooms too. Trust me, this thing was big.

The exhibit spaces included app developers and government health organizations and companies who develop software to help practices manage patient data. There were device manufacturers too, though I didn’t see any business that was specifically talking about their offerings in the diabetes space. In fact, I didn’t see any businesses or organizations talking diabetes in the exhibit areas.

The educational and information-sharing sessions were many, all day long, and covered more subjects than I can even begin to describe. The most attended ones seemed to be anything using the word blockchain. My suspicion is that most of the men in those rooms (and they were almost all men) love the term, but don’t have any idea what blockchain really is… or how it could be used for better health outcomes.

To be honest, I don’t know how it can be used for anything other than evil. Yet.

Going into the conference, I was under the impression that the patient story would be non-existent there, or nearly non-existent. I was wrong.

There were some very well presented sessions and panel discussions involving people living with chronic conditions and telling their stories as only we can do.

I was encouraged by patients and caregivers who have started organizations that are doing their best to advance the cause of compiling and sharing data with medical professionals. Think “I don’t want to have to explain every symptom I have to every doctor at every visit”.

There was a session that included Dr. Joyce Lee as a speaker, and she covered the #WeAreNotWaiting and #OpenAPS movements. There were two other speakers in this presentation who covered other subjects, but when the session was over, all of the questions were for Dr. Lee.

And that brings me to something I learned at this conference. I found out that we, in the diabetes advocacy and technology space, are often miles ahead of those advocating for people living with other conditions.

Where we can afford it, we have access to technology to better help us manage our diabetes. That technology is being delivered to smart devices. There are platforms available for people living with diabetes to upload data from multiple devices and share it with researchers and our healthcare team. When I asked a panel discussion if there were platforms like this to help those living with other conditions track their information, I was met with blank stares.

A few other takeaways from this conference:

– Interoperability was a big theme, and multiple times, a discussion point. I think we’re at the point where everyone understands its importance and what it means for care… we just need industry and healthcare organizations to up the innovation, instead of letting the fire die down after a conference or workshop.

– While there was industry, researchers, hospital organizations, and advocates all in attendance at HIMSS, I didn’t really notice much interaction between the various groups. In a way, that makes sense because you tend to be drawn to the sessions that speak to your area of focus. But I was disappointed when sessions were presented that included patient or caregiver stories, with only 30 or so people in a room that would seat a couple hundred or more.

– There was one thing that I did not experience at this conference, that is a part of just about every other conference I’ve been to. Other than a couple of brief instances, I didn’t really get to interact with anyone at HIMSS. I went to a couple of scheduled meetups that were to take place in common areas, but when I got to their locations, there was no organization, no one introducing themselves, no one saying “over here”… it was just a lot of people coming and going. I think if I attended next year, I might have more of a feel for how to connect with others.

That last takeaway was kind of a downer. Ultimately, I must say that I feel extremely privileged to have been able to attend HIMSS. I did make a few connections, I hope, that will last beyond this conference. I also learned a lot.

I don’t know how this conference has evolved over time, so I don’t know if I can expect there to be much change when the group gets together again next February in Orlando. But since we’re talking technology, and we know that the pace of change in technology is pretty fast, I think next year’s edition of HIMSS should show the organization is going in the right direction, helping to bring patients, caregivers, healthcare professionals, and industry closer than ever before.

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