Tag Archives: children with diabetes

Friends for Life Orlando 2017.

Full disclosure: I was able to spend last Wednesday, Thursday, and Friday at Friends for Life in Orlando, Florida. Diabetes Patient Advocacy Coalition paid for my travel. All opinions are unquestionably mine, and it was my honor to advocate before so many wonderful people.

Just like last year, I worked the DPAC booth in the exhibit hall at Friends for Life, the largest gathering of People With Diabetes in the country. I was also lucky enough to sit in a couple of sessions and spend time once again with diabetes friends.

I remain grateful for the opportunity to advocate for those living with and affected by diabetes, and in the USA, DPAC is the best, easiest way I know of to make your voice heard by elected officials and policy makers across the country. If you haven’t yet, please download the DPAC app now and add your voice to the growing chorus advocating nationwide.

There was quite a bit of lively discussion during the various advocacy sessions led by DPAC CEO Christel Marchand Aprigliano and Stewart Perry. People were asking questions after the sessions and letting their friends know about DPAC too, and that gives us all a great feeling. I know our advocacy efforts will only grow from here.

The rest of the conference (or at least the part that I was there for) was wonderful too, as always. The Children With Diabetes staff really goes out of their way to make everyone feel welcome… even the exhibitors.

I’m not sure I can tell you anything special about this year’s gathering though. I think there are a number of reasons for that.

First, think about it: there really aren’t any amazing product launches that are new. Medtronic’s 670g is fairly new, but Medtronic was once again absent from the largest concentration of Type 1 diabetes patients in one place anywhere in the country.

There weren’t any recent research announcements either. Nothing that makes patients (and especially parents) excited for the next improvement in diabetes management.

Plus, I think Children With Diabetes has a problem. It’s a wonderful problem created by their wonderful efforts to bring additional sessions to adults, and emerging adults, and teens and tweens, and parents, and other caregivers.

I guess what I’m saying is that I don’t want CWD to change any of that. Their challenge going forward will be to avoid having their amazing inclusiveness create a lot of smaller gatherings, rather than what has always felt like one big gathering of diabetes family.

That’s a tall order. But if anyone can pull it off, I suspect Jeff Hitchcock and his fabulous team can do it. Let’s face it: nothing stays the same. It’s not avoiding change, but instead embracing change and making it work for everyone, that helps great things evolve. And Friends for Life has always been a great thing.

In addition to that, there was one part of Friends for Life that I don’t usually pay much attention to… but it really hit me this year.

I took a couple of moments to go through the Quilt for Life exhibit that is always set up in the back of the hall. The display includes hundreds of quilts depicting various diabetes issues, interests, and people living with this insidious condition.

So to finish up, here are a few photos of quilts I noticed. I don’t know why yet, but the last one really got me, and it still does. I practically broke down right on the exhibit hall floor when I saw it. How does it affect you?



I am under no obligation to do so, but I should mention that there is one more Friends for Life gathering coming up this year, and it will be in my part of the world. Friends for Life Falls Church will be coming to the D.C. area October 6, 7, and 8. To find out more, CLICK HERE.

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#FFLFC16: A Weekend Well Spent.

Over the weekend, I was able to attend another gathering where People With Diabetes were able to learn, share, and enjoy the company of one another.

From the team that brings you the Friends for Life conference in Orlando each July, the Falls Church, Virginia version was a welcome weekend spent with a different group than I’m used to hanging out with.

But that’s good, because I like families, I like kids, and I definitely like meeting new people. Over the course of two and a half days, I was also able to get back up to speed on the latest in Artificial Pancreas research from two groups, get firsthand accounts of the amazing development of the Nightscout system, and I was able to take in (and speak with attendees) about advocacy issues including Medicare CGM coverage, our relationship with FDA, #SuspendBidding, and more.

This event was pretty well attended, and the location couldn’t be better. From a purely personal perspective (and this has nothing to do with the content of the conference), the buffet meals were really good. Lots of options, including gluten free, and carb counts on everything.

The content of the sessions, as you might expect, varied depending on whether they were for adults, kids, or parents. The adult sessions included Dr. Korey Hood from Stanford covering diabetes burnout; a guide to applying the glycemic index to what you eat by Gary Scheiner; nearly a full day on diabetes advocacy from the super team of Christel Marchand Aprigliano and Bennet Dunlap; and finding support through social media with Kerri Sparling.

There was also an exhibit space that featured every U.S. pump maker except Medtronic, Roche (and their latest Accu-Chek meter—I’m interested), the Diabetes Patient Advocacy Coalition (with laptops people could use to e-mail their elected officials in Congress and the Senate!), and both the American Diabetes Association and JDRF.

A couple of tidbits from the weekend: we were told that this was the first Children With Diabetes conference that featured more adult attendees with diabetes than kids or families. And, it looks like Jeff Hitchcock and Laura Billetdeaux are looking at options to come back to the Capitol area for another conference very soon. Which I think would be fantastic. It was three years between events in the D.C. area, and that’s too long to wait.

The Great Spousal Unit likes to say that after a diabetes event, I come home more energized, and walking on air for a considerable time afterward. Since she made the trip with me this time, I think she now knows why. I hope she does. Because no matter how often I gather with people who walk the same path I do, it still means a great deal to me to be together with them in the same space.

Thanks to all of the staff and volunteers at Friends for Life Falls Church for being so welcoming, helpful, and informative. And in case you were wondering, I was not given anything to say that. It comes straight from the heart.
 

July #DSMA Blog Carnival: What would YOU change about diabetes?

The July blog carnival topic is a simple, yet interesting one. I could take this in many directions:

We usually talk about how we deal with different aspects of diabetes, or things that would help us deal with those aspects. This month let’s change things up a bit. We’re going to revisit a question from the Open Chat on June 18th and come up with something about diabetes to change. That’s right, we want to know . . . .

If you could change one thing about diabetes, (besides not having it), what would you change? Why?
 
 
I’m going to answer this a little differently from what you might expect. What would I change?

I would make it so no child would ever be diagnosed with diabetes.

I don’t have any kids, but I always wanted one or two of my own. I know many D-parents will scoff at this, but I honestly don’t know how I would deal with a child’s diagnosis. I know, ultimately, you do what you have to do for your children. That’s the way it should be. But man… even today, I just ache every time I read about another kid added to our little club. No child should ever have to face my kind of life so early on in their own development.

And what about the parents? I’m really just guessing here, but I’ll bet that something like a child’s diabetes affects the parents way more than they ever let on. Sending their child off to school or camp without knowing how their day will turn out. Communicating with the insurance company to get durable medical or prescriptions straightened out. Setting the alarm for the middle of the night so they can get up and check their kid (or kids), every single night for as many nights, weeks, months, and years as it takes. No parent should ever have to face this kind of burden.

And these are the problems of someone who has access to care and insulin and the latest medical devices, which, as we know, isn’t always the case.

I was lucky enough to be diagnosed Type 1 as an adult. By the time I was diagnosed, I had my own job and my own insurance. I had lots to learn and a lot of work to do, but at least I had a bit of a head start compared to the children who live with diabetes. Kids and Parents are blind-sided by this kind of news– at a time when a child is growing, learning, experiencing all the joys of life, they now have to add fingersticks and carb counting and bolus calculations and infusion set changes. There is nothing that’s right or fair about that.

So if I could, if I couldn’t eradicate it entirely, I would make it so parents would never have to hear that their child has been diagnosed with diabetes.

Unfortunately, I can’t do that. But… Do you know what I can do? I can help educate people. I can speak out for better healthcare and greater access to care. I can promote greater understanding. I can participate in walks and rides and other events that help raise money to fund bigger research, better tools, and hopefully, a cure. I can write my elected officials. I can support the amazing D-parents who are courageously telling their story. If I can’t remove diabetes from my vocabulary entirely, I can at least work toward making life a lot better for the kids.

Even though it might cause an issue with the naming of certain conferences around the country, my wish is for no more children with diabetes. If I ever had a child of my own, I’d want that to be what I’d change. I’d want that to be my legacy.
 
 
This post is my July entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/05/may-dsma-blog-carnival-4/
 
 
 

#CWDTech 2013 Part Two.

This past weekend’s Children with Diabetes Focus on Technology conference in Washington, D.C. gave me a lot of insight on gathering information, staying motivated, and living a better life with diabetes.

Not all of that information came from the scheduled sessions.

Standing:  Myself, Jill Weissberg-Benchell, Ph.D., C.D.E., Kerri Sparling, Karen Graffeo, Shannon Marengo.  Seated:  Christopher Angell and Scott Johnson

Standing: Myself, Jill Weissberg-Benchell, Ph.D., C.D.E., Kerri Sparling, Karen Graffeo, Shannon Marengo. Seated: Christopher Angell and Scott Johnson

I’m always a little wary of meeting someone in person that I’ve only seen, heard, or read about in another forum. Sometimes that’s because those kinds of meetings haven’t always gone well for me. But mostly, it’s because I’m really and truly worried about annoying someone, taking up their time with only my questions when a hundred others would like to do the same, and giving them the uncomfortable feeling that I’m immediately their best friend when really, they hardly know me.

Does that sound like I’m over-thinking it? Yeah, I know. I also know that I’m better at building relationships from the ground up, starting them at a place where the other person is most comfortable. I never want to assume anything about anyone. So when we went to sign in at the conference on Friday night, I didn’t turn around right away when I heard someone behind me calling my name. It was Karen of Bitter-Sweet Diabetes and Diabetes Blog Week. I got a big hug from her and Scott Johnson. Maureen didn’t show it, but she was shocked. At me. She probably thought I would pass out or something. My own family doesn’t hug like that, and she knows it’s out of the norm for me. Later she told me that after that, she wasn’t worried about me the rest of the weekend.

But let me back up a minute. This is about the conference after all, and I think it’s important to note (again) that a lot of support and information-sharing goes on in between all of the items on the official agenda.

First, let’s cover the exhibit space. This is where all of the vendors are set up peddling wares like the Animas pump, VerioIQ and iBGStar meters, Orbit infusion sets, and Glucolift glucose tabs. ADA and JDRF (hello Delia Whitfield) each had a table too, though, as you might expect, they were on opposite ends of the exhibit space.

Why is the exhibit hall a big deal? Oh, I so wish that I had attended a conference like this when I was thinking about starting on an insulin pump. It would have given me a chance to see products in person, hold them in my hands, and most of all, ask questions of the company pushing the device. Don’t know if it would have changed my mind. But I would’ve liked more information, even if I didn’t know all of the questions to ask at the time.

The attendees at the conference are there in the meeting rooms, exhibit space, and throughout the hotel for the duration of the conference. Getting just one tip on managing BGs, or getting the support and perspective of someone who’s gone through what you’re going through is worth the price of admission. And helping someone answer a question, or giving that support and perspective from your point of view really feels great.

The CWD staff and faculty appear to be very hands-on, helping to answer questions and also listening to concerns or suggestions. They’re very approachable, which is super. I love that I didn’t see a tie on anyone all weekend. And I’m a little jealous, ‘cause I don’t get to dress like that for my job. I also liked the buffet, with its nutritional information in front of every item, right down to the gluten free bread (yes, I’m still eating it – go figure).

So back to the individuals I met over the weekend that I have seen, heard, or read about before. Here’s a list, and I hope I didn’t leave anyone out:
Karen, Scott, Kerri, Shannon, Christopher Angell, Dayle and Chris. Also Tom Karlya, Ed Damiano, Harold Sanco, and Sebastien Sasseville.

I’ve seen a lot of posts over the last year and a half or so talking about meeting people in real life, and how great it was, and how special it is to be in the presence of such lovely people, all of whom “get it”.

What I really liked was how normal it was. I mean, it was cool that everyone did their testing and bolusing right out in the open, and that questions were asked and answered with candor and thoughtfulness. What I didn’t expect was how normal that felt. I can’t ever remember feeling like that when talking about my diabetes. I wouldn’t wish for this at all, but there was a point where it almost felt like most of the world has diabetes, and a select few were left with working pancreases. Weird, huh? I admit that I wasn’t expecting to feel that sense of… not having to be on stage with my diabetes all the time. That’s a pretty relaxing place to be. Thanks to everyone for making me feel normal.

So that’s my take. And that’s why I would recommend attending this conference in the future, or the Friends for Life conference in Orlando in July. Or one of the other conferences in the USA, Canada, or the UK. I wouldn’t have said this even six months ago. But I’m saying it now. Go and connect. Learn something. Find your normal.
 
 
 

#CWDTech 2013 Part One.

I’m a little late posting today… I stayed up late last night celebrating the Baltimore Ravens super bowl victory. Yay Ravens!

I didn’t get much sleep on Friday or Saturday either. The Great Spousal Unit and I were in Crystal City, Virginia (just across the river from Washington, D.C.) for the Children With Diabetes Focus on Technology conference. It was my first time at an event like this in at least a decade.

There is so much to talk about. I have to admit to suffering from a bit of information overload. Today, let me just talk about what I picked up from the sessions I attended. In part Two, I’ll try to cover interactions outside of the scheduled content.

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So let’s start at the beginning. The opening keynote was a dynamic talk from Dr. Ken Moritsugu, a former Surgeon General and Deputy Surgeon General who is now serving Chairman of the Johnson and Johnson Diabetes Institute. Dr. Moritsugu explained in great detail the importance of being an informed health consumer. There’s a lot of misinformation out there, and we need to do our best to separate fact from fiction. According to Dr. Moritsugu, it’s important to “access, understand, and use health related information to make sound, thoughtful health decisions”. What does that mean? It helps to remember three things:

1. Consider the source – Are you reading something from the Centers for Disease Control or World Health Organization, or is it from the “latest dream cure” website that promises much and delivers nothing in the way of information?

2. Risk is relative – Sometimes, a headline can grab our attention. But there’s often more to a story than just the headline. So when you see something like “Scientists find a link between breastfeeding and Type 1 Diabetes”, do the research. Was the scientific study realistic? Was it done on a large, diverse sample size, or did the subjects of the story come from a smaller subset of data that really doesn’t apply in the real world? Sometimes, the answers will surprise you.

3. Don’t forget to communicate with healthcare professionals – This is great for me. Sometimes my endocrinologist has additional information on something I just read about quickly online. Sometimes, she can go back and check things out if I have a concern about something, and then we’ll discuss it either in an e-mail or at my next appointment. Hopefully, you can count on having a two-way conversation with your healthcare professionals to hash out the truth and deception in stories about diabetes.

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Next we heard from Ed Damiano, PhD, who is Associate Professor of Biomedical Engineering at Boston University. He’s part of a large team working in Boston on bionic pancreas technology – known generally as the Artificial Pancreas. After visiting the University of Virginia’s Center for Diabetes Technology last year, I was interested in hearing the perspective of someone else working on the same technology. Let me tell you… it was no less fascinating. It was interesting to see the device they’re working with too. An iPhone (this is nothing new… UVA’s program uses an Android phone), with some cool characteristics. Among them are a bolus feature that doesn’t include a carbohydrate count. It simply asks you to say whether you’re eating a Typical Amount, Less Than a Typical Amount, or A Small Bite. The AP device does the rest. If something like this comes to market, carb counts could be a thing of the past. Is that crazy?

There’s more to this, of course. The team in Boston is still hoping for a better version of microdose glucagon to work in their dual-chamber device (which has already been approved for clinical testing). Tiny doses of insulin and glucagon are administered in the device to keep the patient in an appropriate range. Yes, there’s a lot more here that could probably take up an entire post, so I’m encouraging you to get more information on the work being done. When will something like this be available to all People With Diabetes? Right now, we’re looking at around 2017. And since that’s four years away, the timeline may still move a bit. But the progress so far is very encouraging.

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Got a chance to sit in a great discussion with Kerri Sparling and Scott Johnson that delved into Diabetes Devices in the Real World. People talked about everything from social media to carrying cases for your diabetes supplies to how you carry and show (or don’t show) your diabetes devices in public. It was a lively talk involving a variety of PWDs and parents who had lots of questions, but also lots of super information to share. People were creating Twitter accounts on the spot and showing off their D-bags. I loved watching faces light up when they started to understand something that they didn’t quite understand before, or found sources of information that they weren’t aware of prior to this get-together.

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Sunday morning’s closing keynote spoke volumes to myself and to Maureen. Sebastien Sasseville is the first Canadian with diabetes to summit Mount Everest. Not enough for you? Last year, he completed the self-supported Sahara Race in Africa, through the world’s largest non-polar desert, running 250km over seven days. He talked about both of these events and gave us some important insights. Most meaningful to me was when he talked about doing the Everest expedition. Over two months, their team had to start at base camp, then climb up to various camps before climbing back down again. They had to do this several times before making an attempt at the summit. The point was to acclimate the team to climbing at that altitude (can you really get acclimated to something like that?). The point is that while we have this constant “perfect diabetes management” goal in our minds, sometimes our path to that goal is filled with ups and downs that help us get used to what we need to make it all the way toward our ultimate goal. And what if we reach that goal: that perfect A1c, or perfect pregnancy with diabetes. What happens then? Sometimes, our goals change. Sometimes the bar gets moved. Both up and down. And that’s okay. And fear about the journey should not keep us from going after our goals.

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It was an interesting 36 hours or so. Soaking up a lot of information and hearing from people living the lives that we’re all living. Sometimes inspiring, sometimes life-affirming, sometimes funny. I’m lucky this was close enough that I could attend.

In part Two, I’ll try to cover my experiences outside of the scheduled sessions.
 
 
 

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