Category Archives: Events

The Diabetes UnConference Alexandria 2017.

Full Disclosure: The Diabetes Collective paid for my hotel accommodations so I could reprise my role as a facilitator at the Diabetes UnConference. All opinions are my own.

That t-shirt says it all: No judgement. Just support.

The fifth Diabetes UnConference has completed. Our venue was the Embassy Suites hotel in Alexandria, Virginia. This time, the UnConference was co-located with the Diabetes Sisters Weekend for Women conference. This created the dynamic where, in addition to the separately attended UnConference and the Weekend for Women sessions, there were general education sessions available to both groups.

Obviously, I can’t speak to the Weekend for Women track, but they’re a fantastic organization populated with some of the smartest, strongest, most supportive people you could ever meet… some of whom are actually Diabetes UnConference alumni and facilitators. The general education track was full of informative tidbits.

And the UnConference was the UnConference. A safe, supportive space where adults with diabetes and their PLUs, or People who Love Us, could talk about and explore the various things going on in our heads and our hearts these days. And believe me, there was a lot to talk about.

As usual, the Diabetes UnConference weekend included cheerful and excited Hellos. It included intense discussions, and evenings out with the best of friends. It included tearful Goodbyes and promises to stay in touch and plan meetups in the future. Which brings me to this:

There will not be a Diabetes UnConference in 2018.

There are a number of reasons for this. Mostly, it’s time. Let’s face it… diabetes, and diabetes advocacy, takes a lot of our time these days. Plus, now that we’ve done this five times already(!), maybe it’s time to take a breather and reimagine the Diabetes UnConference for 2019.

One thing’s for sure though: no UnConference does not mean no UnConference activity. I’m looking forward to UnConference alumni gathering throughout the country over the next couple of years, to continue discussions, support, and all the things that make our safe, protected time together as wonderful as it has ever been.

My gosh, I already miss my tribe.

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Friends for Life Falls Church.

Like the Energizer bunny, Friends for Life just keeps going.

I think Children With Diabetes, the organization that stages the Friends for Life conferences throughout the USA, and in the UK too (and occasionally Canada), would rather be thought of on their own, as opposed to being associated with a battery company. But that aside, after attending many of these now, I am still amazed at how they make each gathering spectacular and unique.

In Falls Church, Virginia last week, I was working the DPAC table in the exhibit space again, like I’ve been doing for a while now. That means I don’t get to get into many sessions, but I do get to see a lot that goes on around the venue. Not backstage pass kind of stuff, but things that I think help me see how much of an undertaking each conference really is.

The first thing I noticed was the update to the sessions in the schedule. More advocacy sessions with Christel Marchand Aprigliano and Stewart Perry. Cynthia Rice from JDRF and Paul Madden from ADA also jumped in here and there.

Also, there were sessions about Succeeding as and Adult and Parenting with Type 1, a Safe Zone discussion for Significant Others of adults with T1D, and two sessions for Grandparents and Occasional Caregivers. I saw a session on Your Legal Rights as a Person With Diabetes. When you’re tackling these subjects, led by smart people like Kerri Sparling, Tamara and Sean Oser, Brian Grant, and Leigh Davis Fickling, you know you’re going to learn something significant without needing a PhD to understand the subject matter.

Unlike some of the other FFL events I’ve been to, this time I was able to see a lot of the staff working in the background to keep things running smoothly. Think about everything that needs to be done: Making sure everything arrives (think T-shirts, badges, and those wonderful green bracelets). Setup and registration. Getting rooms ready with the right amount of tables and chairs, screens to view presentations, and branding material. Coordinating meals and food choices with hotel staff.

That doesn’t even count little extra touches that mean a lot. When someone at registration asked me if I had diabetes (do I get a green bracelet? YES!), then someone else asked, “Do you still have an appendix?”, it was the funniest moment of the entire weekend. I don’t know how they all remember so much.

I’m not kidding… everyone works so hard, yet makes it look so effortless. Many of the first timers I met, from Ohio and North Carolina and Pennsylvania and beyond, really appreciated how they were made to feel at home, and how accessible everyone was. How can I describe it? Friends for Life is a comfortable place where everyone feels like they belong. It’s a conference, while redefining the very meaning of that word. Friends for Life is an experience, not one time, but always.

Here’s your notice: if you live in the eastern half of the USA, you should know that Friends for Life is coming back to Falls Church, Virginia next October. If you can’t make it to the big event at Disney in July, this is a great opportunity to learn a lot, interact with others living the same life you do, and enjoy being part of the biggest group that no one wants to belong to… that just happens to be populated with the most wonderful people. To find out more, go to childrenwithdiabetes.com

Extra: You should definitely read this post by Leigh Fickling over at Six Until Me. This describes FFL maybe better than anything you’ve read above.

**Note: I get nothing for writing about Friends for Life. DPAC paid for my travel and accommodations to Falls Church, Virginia. Opinions on Friends for Life are entirely my own.

We have a winner!

How many of you remember this post from a few weeks ago?

I have received multiple responses to this, and I am happy to announce that we have a winner.

Because a second, generous donor (who wishes to remain anonymous) stepped forward, we were able, together, to provide registration for the Diabetes UnConference and two nights’ stay at the Embassy Suites Alexandria, the host hotel for this gathering.

Like I said in the original post, I realize this doesn’t make everything suddenly more equal and inclusive at diabetes events throughout America. Especially in light of the terrorism that took place in one of my favorite places in the world, Charlottesville, Virginia last weekend, this seems like a rather meek gesture.

Sometimes we can’t change the whole world… but we can influence our little part of it.

I am thrilled about sending our winner on this trip, and they are excited about attending.

I’m not sharing the identity of the winner. I thought about it. But I felt that whether I did or I didn’t reveal, I could be open to criticism. By not revealing, someone could say that I’m trying to make it about me, or hide the fact that I did this. That’s a ridiculous argument, but someone could say that. If I did tell everyone who it is, I risk looking like I’m showing them off for my own benefit, which, frankly, is not what this scholarship offer or the Diabetes UnConference is about in any way.

So our scholarship winner is free to share that they are the scholarship winner, should they want to. But again, in the spirit of inclusion, I want them first and foremost to be thought of as a welcomed attendee… as a valued member of our tribe… as a respected contributor to our community… as a person.

For now, there is still time to register for the Diabetes UnConference Alexandria (co-located with Diabetes Sisters’ Weekend for Women conference), happening October 13-15. Room reservations are filling up fast, so if you want in, your time is limited.

I can truly say that it has often been imitated, but never duplicated. It is that special and unique. Come to our gathering and share. Experience. Explore. Not about diabetes life, but about life with diabetes. No structure. No judgement. Find your tribe. Love them hard.

See you in October!

Disclosure: I will be part of the team of facilitators at the Diabetes UnConference Alexandria October 13-15, 2017. All opinions are my own.

#BeyondA1c: Consensus.

Last Friday, I was able to take the day off from work and go down to Bethesda, Maryland for another in the series of #BeyondA1c meetings staged by The diaTribe Foundation. There were 100 or more participants in the room, nearly all of them smarter than me. Okay, all of them were smarter than me.

There were multiple presentations throughout the day, from researchers, academics, advocates, and others. It was a very full day.

This was designed to build upon previous discussions on this topic at the U.S. Food and Drug Administration. Remember crashing the web server at FDA back in 2014?. How about last August’s discussions in the Great Hall on the White Oak campus?

If I were to pick a theme for this meeting, I think the theme would be consensus. Everyone in the room appears to be dedicated to the idea that A1c should not be the sole arbiter of our success or failure with diabetes. But it’s still a complex issue.

Wait… let me back up a bit, and explain to you what something like this could mean in the future.

If we (and by we I mean all of us) went beyond A1c in measuring outcomes, it could mean considering time in range as a more reliable factor, and that could mean using more advanced CGM metrics. What those might look like, I don’t think anyone knows yet.

Going beyond A1c could mean updates to medical journals and medical teachings.

Going beyond A1c could mean reconfiguring U.S. Food and Drug Administration protocols, both on the drug and the device side.

Going beyond A1c could mean manufacturers changing the wording in our drug and device packaging.

Going beyond A1c could mean a new set of measurement criteria for some clinical trials.

One of the topics that kept coming up concerned language: do we distinguish a difference between a mild hypoglycemic event (like 70 mg/dL) and a more serious one (like below 54 mg/dL)? For the record, it’s not likely that the FDA would allow the word “serious” to be used, because that word carries a very distinct definition at the FDA.

But there was consensus in the room surrounding the notion that blood glucose between 55 and 70 would constitute mild hypoglycemia, and anything under 54 should be considered severe or urgent (or, insert your word here). So, if they get the wording right, and if I can draw a mental picture right, here’s what that might mean:

My endocrinologist might still perform an A1c, but be far more interested in my CGM data when deciding whether my diabetes management is on track, and when considering drugs, devices, and other therapy. New medical professionals would need to be taught how to do this, and existing medical professionals would need to learn it too.

Those conducting clinical trials would need to show positive time in range numbers in studies featuring new drugs and devices. Drug and device makers might need to include frequency of severe hypoglycemia in packaging for their products.

FDA might need to weigh time in range and frequency of mild versus severe hypoglycemia when considering approval of something new. They would also need to consider patient input: for instance, if mild hypoglycemia were to occur as a side effect of a drug, but studies indicated that severe hypos almost never occurred, patients might say “we’re okay with mild hypos… we just want to avoid the more serious cases”.

David Lee Strasberg moderates a discussion between Kelly Close (left) and Cherise Shockley


Those are all hypotheticals, of course, but they were all discussed at this meeting. I was also thrilled that Cherise Shockley was present, and brought many of the tweets from last week’s #Beyond A1c #DSMA chat with her to show those in attendance. It made an impression, from both a social media and a person-to-person viewpoint.

That brings me to another thing I was thrilled with: lots of patient-centered talk. I kept a running count of how many times the phrase “patient reported outcomes” was said throughout the day… my final count was 16. On top of that, there was a lot of additional discussion about how we, as patients, would like to see less emphasis on A1c, and how we’re already going beyond A1c to help us manage each and every day. In this regard, medical professionals, researchers, and clinicians need to catch up to us.

I need to thank Kelly Close and the diaTribe Foundation for putting together a fantastic series of discussions, and also for bringing such incredibly dedicated people into the room. Plus, thanks for making these meetings so open and transparent, and allowing me to be there in person.

In one day, I was able to hear from Kelly Close and Adam Brown. I saw a fascinating presentation from former American Diabetes Association Chief Scientific & Medical Officer Dr. Bob Ratner… he still has the passion he always displayed at ADA. Dr. Bart Van der Schueren gave a super presentation showing the European take on how Beyond A1c is evolving on the other side of the Atlantic. JDRF’s Aaron Kowalski brought his passionate voice, as usual, to a panel discussion on standardization of data, definitions, and terminology. I sat in a working group on clinical trials led by Dr. Lori Laffel of the Joslin Diabetes Center (we both agreed later that it was like herding cats). I met representatives from the device industry and FDA who were present. Yes, it was a very full Friday, but truthfully, I hated to see it end.

If you know me at all, you know I can often be more cynical than appreciative about some things. The fact that I’m so appreciative after this event is indicative of the hard work that so many caring individuals have already put in on this cause.

I’m sure there will be more discussion. Not sure where it will lead. But that brings me back to the idea of consensus that I mentioned about 500 words ago. I really feel like we are close on this. We need to get the language figured out, set the standards, then go to the various stakeholders in all this and push it over the finish line.

Everyone in the room Friday believes in the idea of going beyond A1c. They believe we have the tools now to do so. And the imperative. Why? Patients aren’t waiting. Now it’s up to all of us to help turn consensus into conscientious change for the better.

Just one step.

Update: Another donor has graciously stepped forward, and now I can say that we can provide registration for the Diabetes UnConference and Friday and Saturday night at the destination hotel for the event. Yay!
I will pick a winner on August 14.

I read with great interest this well-written article from Chelcie Rice that was featured over at Insulin Nation recently. Christopher Snider and his sister Jeanette talked about the post and the subject on their podcast, Mark All That Apply. I think both are worthy of attention, and for what it’s worth, both have me thinking about this subject again.

As I mentioned to Chelcie after he linked to his story on Facebook, I think about the lack of diversity every time I attend a diabetes event. It’s not that there is a lack of color at events; often, there is no color at all. Even though we all know that people of color are disproportionately affected by diabetes. It’s something that’s entirely different from the ethnic makeup in every other part of my life.

But hey, I’m an advocate… but wait, I can’t change my ethnicity… so what should I really do if no one shows up who doesn’t look like me? I’m not sure exactly what I should do. But I know what I can do.

I will promise to provide one scholarship to this October’s Diabetes UnConference to a person of color. I will promise to pay for registration to this event in Alexandria, Virginia.

This will only include the price of registration. I’m not rich enough to include travel, so that will not be included. I can’t guarantee much else either. But hopefully, this is something, and hopefully it will get someone to consider applying for the scholarship who up to now has been on the fence about attending a diabetes event.

Why am I doing this? Because I’m altruistic and wonderful? It’s a little more complex than that.

The truth is, every single time I’m at a conference or research summit, I notice the lack of diversity in the room, and I think about it. This past Friday’s Outcomes Beyond A1c meeting (more on that later in the week) was an exception, but most of the diversity in the room came from outside the USA. To this point, I haven’t done anything about what I’ve seen.

I’m also well aware that this won’t exactly solve the issue of diabetes meetings, conferences, etc. that are not as diverse as they could be. I mean, it’s not like people of color have been excluded from the events I’ve attended. And where there has been diversity, it appears to me that people have been welcoming.

But by and large, diabetes conferences and other events still look different from the way the rest of my world looks. And if doing this one, small thing helps to begin to change that, if it begins to help communities that have been underrepresented, I’m comfortable with my decision.

There are powerful leaders among us, and it would be ludicrous to think that they are all white. As I’m fond of saying, we need all the advocates we can get. Frankly, I don’t care what they look like. And while I can’t speak for them, I suspect that the white friends I have in the diabetes community feel the same way.

Likewise, there are many in need of support and empowerment in the diabetes community, and I have to believe the needs I see among those who look like me are at least matched by those who do not look like me. And if they’re in need, frankly, I don’t care what they look like.

I haven’t thought very hard about rules for this little effort. But for starters, here’s what I’m looking for:

– You need to be a person of color (loosely defined; in other words, you don’t look like me)

– Since this is for the Diabetes UnConference, you must be an adult living with diabetes, or an adult close to someone living with diabetes of any type

– You need to want to use your opportunity to help others… paying it forward is part of the plan

We’ll make up the rest as we go along.

If you’re interested, send me an e-mail using the E-Mail Stephen link in the upper left part of this page. On August 14, I will pick a winner from among those responding. Be ready for follow-up questions. I don’t want to make it difficult for you, but I do want to make sure you can make it, and I want to make sure this event is a good fit for you.

One more ask: Please share this with others you know in the diabetes community. I would be thrilled to have to choose from a number of applicants.

Finally, this is not all there is. If we think about it, probably all of us, no matter what we look like, can figure out a way to help make diabetes events look more like the rest of the communities we live in. I’m hoping I can provide scholarships in the future. Not sure if I can, but that’s the goal. But that’s not all I can do. Whether it’s through communicating with additional diabetes groups, or through a donation, or through continuing to be a welcoming presence wherever we are, I know you and I can help make diversity a part of the diabetes advocacy we all believe in.

We all want to reduce the burden of diabetes on everyone living with this disease. This is just one small step. A symbolic step perhaps, but it’s what I can do.
Now, let me ask: What can you do?

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