Category Archives: Events

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.

Now, more than ever.

I wonder sometimes if I haven’t changed over the last several months.

These are tough times here where I live, and it seems like many of the things I believe in, the things I was taught in school, don’t really apply to today’s America. Or maybe this is the America that was here all along, but it’s just showing itself in a more public way. I realize just reading that can inspire different interpretations based on your political leanings, but this is not about that.

Regardless of how you look at things, there seems to be a lot to worry about.

I’m getting older… there’s that. And, of course, health care is multi-faceted and multi-argued, and it probably will be for the foreseeable future. Where I can, I’m trying to be a better friend, a better colleague, a better person overall. However, in some ways, I fear I’ve become a less happy person at times.

Let’s face it… I think we’re all feeling a little more stressed out these days.

That’s why this community, this diabetes community, is so important.

Photo courtesy of The Diabetes Collective, Inc.


That photo is from the second Diabetes UnConference. There are a number of friendships that begin on UnConference weekend that continue far beyond the event itself. Friendships that stick to you. Friendships that restore your faith in people. Friendships that make the time apart from each other seem interminable, and the time spent with each other flash by in a nanosecond.

Whether it’s virtually, or over brunch like it was this past weekend, being able to communicate with others who walk the same stretch of road you walk can have a huge, positive impact. There’s something about the feeling you get knowing that you belong, not because you’re famous or independently wealthy or part of another special group… but because you’re stuck with a condition that no one wants. And someone else is too.

It’s the feeling that amazingly, something about this crappy disease is worth celebrating.

Photo courtesy of Rhonda B.


Does this mean we’re not going to experience problems? Of course we are. Life doesn’t go away just because we get to spend a couple hours in the presence of friends.

But those two hours certainly make those problems a little more bearable.

I think that’s the point. Even when we’re up against deadlines and doctor appointments; projects and finger pricks; goals and glucose issues, we have our friends to lean on, who understand, and just help us forget about the drag of diabetes for a while.

Now, more than ever, we all need friends who remind us that there’s more to life than the next big thing to complain about. If you don’t have one, I encourage you to find one or more friends, virtually or in person, who will accept you for the contribution to community that you truly are or wish to be.

Looking to make new friends? Want to talk about diabetes in a safe, supportive atmosphere? The Diabetes UnConference is coming to Northern Virginia October 13 – 15, 2017. This fall, the UnConference is being co-hosted along with the Diabetes Sisters Weekend for Women. Two chances to make new friends! To learn more, and to start the process of making new friends in the diabetes community, CLICK HERE.

FDA Workshop: Engaging with FDA in the drug approval process.

Between Diabetes Blog Week and being away on vacation for the past week, I never got a chance to tell this story.

On May 12, I took the day off of work to attend a public workshop at the FDA’s sprawling White Oak headquarters in Silver Spring, Maryland. This gathering was not specifically diabetes related, but I learned a lot anyway. Officially, the workshop was called:

Roadmap for Engaging with FDA’s Center for Drug Evaluation and Research

At this workshop, I was reminded once again that FDA officials speak using an alphabet soup of acronyms: CDER (Center for Drug Evaluation and Research), PASE (Professional Affairs and Stakeholder Engagement), DDM (Division of Dockets and Management), DDT/COA (Drug Development Tools Clinical Outcome Assessments), OHCA (Office of Health and Constituent Affairs), OSP (Office of Strategic Programs). Fortunately, the presenters, though heavy on acronyms, didn’t rely on them to convey their messages.

And the messages were significant, with a huge amount of information provided on what to know and how to engage with FDA regarding drug approvals. Want to know about diabetes drug approvals that did or did not happen? There’s a way to do that. Want to hold a meeting to bring patients together and invite the FDA to take part? There’s a way to do that. Want to stay informed on the latest news? That’s right… there’s a way to do that.



So, what was covered? A number of subjects, including the entire drug approval process, from start to finish. We learned how to “Rock the Docket” and use the Division of Dockets Management to research what’s happening in drug approvals that might affect People With Diabetes. There was an entire presentation on the various ways that FDA, and CDER in general, interact via social media.

And there were several interactive moments between FDA and attendees themselves, including question and answer sessions after presentations, and a chance to answer questions about presentations just concluded. Questions like “After this presentation, I am A) Not very confident about explaining the drug approval process, B) Somewhat confident about explaining the drug approval process, or C) Very confident about explaining the drug approval process”.
We recorded our answers using devices like these:

After lunch, there was a round of FDA Jeopardy. My team finished second out of four, but unfortunately, no prize money was awarded.

There were also a couple of presentations from representatives of patient communities who have had success interacting with FDA on drug approvals for medications that have helped the patients they represent.

I have to say that at the end of the day, I felt like the Center for Drug Evaluation and Research has a good handle on what they do, how important their mission is to people living with chronic conditions, and a valid social media strategy that keeps patients informed.

I was grateful to attend this workshop, and I walked away with a few new contacts from other patient organizations too. Not a bad way to spend my day off.

**To look at meeting presentation decks and order a transcription of the meeting, CLICK HERE.

Sign up for these public meetings.

Hello…. I hope everyone’s week has been grand. For me, life has been a series of meetings and appointments and lots of work. While I have a moment, I want to let you know about two upcoming meetings that offer both educational and advocacy opportunities.

On April 26 and 27, there will be a meeting at the offices of the National Institutes of Health in Rockville, Maryland. The National Institute of Diabetes and Digestive Kidney Diseases (NIDDK) is chairing an interagency coordinating committee meeting where, in this case, they will be talking about prioritizing Type 1 diabetes research.

Like so many meetings, this one is open to the public. There will not be an opportunity to make public comments in person, but there is a way to e-mail your concerns ahead of time. Then, if you are able, you can go to the meeting and be the eyes and ears of the community, so to speak. We need that sort of thing in these forums.

To find out more, and to register, CLICK HERE.

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On May 12, there will be another public workshop at the U.S. Food and Drug Administration. This one is specifically advocacy-based. In this workshop, attendees will get direct input from FDA staff on the roadmap for approval of new drug therapies. You’ll get tips on how to make your voice heard in the approval process. And you’ll get additional information on how FDA uses the patient voice to help make informed decisions, while protecting patient safety.

This is a great opportunity to learn how the sausage is made. Metaphors! I’m full of metaphors today!

The workshop takes place at the FDA’s sprawling White Oak campus in Silver Spring, Maryland on Friday, May 12. To find out more, and to register, CLICK HERE.
 
 
That’s what’s happening near where I am… what’s going on in your part of the world?

2017 JDRF #TypeOneNation #DC Summit.

I have to admit… when I headed to my fifth JDRF Research Summit in Bethesda, Maryland on Saturday, I just didn’t know if it was going to be worth it. Would I see or hear anything new or different? And how, after writing about it for four years in a row… how in the world would I find a way to write about it again? I mean, I couldn’t even think of an interesting headline to write this time.

But this JDRF event was different. There were several moments that were different from the other four years of this gathering. The TypeOneNation summit has grown up, in more ways than one. It has evolved somewhat. Let me share:

Our day began with several breakout sessions, where kids, teens, and adults went to separate rooms and discussed things that are important to them. Our adult T1D group included a panel comprised of medical professionals, a lawyer, an expert in exercise and living with diabetes, and JDRF’s VP of Advocacy and Policy. It was a full hour-long question and answer session on all of these subjects. Maybe it was familiarity, or maybe it was because it’s been on my mind a lot, but I asked the first question, and for fifteen minutes or so, we had a lively advocacy discussion. Eventually, we did cover all the subjects mentioned above.

But the really interesting thing to me was that there were, by my count, 40 to 50 adults in the room. A year ago, our adult breakout group was maybe 15 to 20. Two years earlier, I think I met one or two adults with diabetes the entire day. In my humble opinion, JDRF still has a long way to go in engaging adults in ways that will help both them and the organization, but there’s no question– JDRF is growing up. Compared to last year’s summit and the year before? Big, positive difference.

Once we were all gathered in the big room for the day, Aaron Kowalski got into where JDRF is on a number of research initiatives that it funds. Aaron is as good as anyone at giving people a comprehensive rundown on the status of artificial pancreas research, who has skin in the game, and where each group is in terms of product and potential approval. I know there were some returnees in attendance, and for those who were only beginning to hear about artificial pancreas a few years ago, Aaron’s talk was a great update.

Continuing on the research front, Dr. Juan Dominguez-Bendala from Diabetes Research Institute in Miami was able to fill us in on where they are with stem cell therapy development. It was very detailed, so I can’t really give it justice here. To be honest, I’m not really jazzed about this kind of research, because I can’t quite see where it will be practical for a long, long time. But what I did like about Dr. Dominguez-Bendala’s presentation was his willingness to address the limitations of stem cell therapy, including ViaCyte, that exist today. I think that helped me recognize that while there’s a lot left to do, DRI has come an awfully long way since they began this kind of research.

And for the first time, the psychosocial impact of living with Type 1 Diabetes was discussed. This presentation was made by three pediatric psychologists, so the discussion was entirely kid-based. There was no patient perspective provided, and though I don’t know how they would have worked that out, I think it would have been great. Also, there were definitely questions from adults looking for resources to help them too. I made sure I followed up with those people individually to let them know about the Diabetes UnConference (Hello Doris and Jenny!).

Finally, it was Brian Herrick with a light, and at times, funny presentation about 25 years of living with Type 1, and his experiences going through artificial pancreas clinical trials, which was a great way to wrap up. After another Q&A session with all of the presenters, the summit was complete, save for an adults-only happy hour at the hotel next door. The main part of the program was over earlier this time, which likely resulted in less glazed over eyes late in the afternoon. Finishing on a lighter note helped everyone feel good as they headed home.

I should also mention that the best part of the day was getting to meet new friends, and spending time with Diabetes UnConference alumni Leyla and Terri.

Leyla is one of the coordinators of the March for Health in Washington, D.C. on April 1st. Time with them was worth the trip in and of itself.

So… while I began my day wondering what would be different, and how I would cover it, as you can see, there was plenty that was noteworthy this time. All in all, a great way to spend a Saturday.

If you are living in the USA, chances are there is a TypeOneNation event near you. To find out more, go to jdrfsummit.org and find out where your free summit will take place.

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