Tag Archives: JDRF Type One Nation Summit

Put these conferences on your calendar… now!

January 2, 2018 – 10:11 am

Happy New Year! Since we’ve reached the start of a new year, you might be wondering if there are events in your area that speak to diabetes, or to health care in general in 2018. If you live in my part of the world, the answer is Yes.

This is by no means a comprehensive diabetes conference schedule like the ones Christel Marchand Aprigliano used to write up. But if you live here in the USA, there are a few things you might want to mark your calendar for. Hopefully, these will get you thinking about how to further connect with the community this year:
 
 
Healthcare Costs Innovation Summit. This is an HCI-DC event, sponsored by West Health (HCI stands for Health Care Innovation). While this is not diabetes specific, I can relate that I went to one of these a couple of years ago and learned a lot.

This year’s one day event centers around what we, as a group, on this one day, can come up with in terms of innovations and policy fixes that might help slow down or reverse the rising cost of health care in America. Timely, yes?

Andy Slavitt, former acting commissioner for the Centers for Medicare and Medicaid Services, and a font of information on health care in America (seriously, follow him on Twitter) will be speaking, among others.

The best news is that the summit is free. The second best news is that it will be live and live streamed, so if you can’t get to Washington in February, you can still look in.

Healthcare Costs Innovation Summit
Wednesday, February 21, 2018 9:00 a.m. to 3:00 p.m.
Amphitheater at Ronald Reagan Building and International Trade Center
1300 Pennsylvania Avenue NW, Washington, D.C.
CLICK HERE to attend or sign up for the live stream.

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JDRF TypeOneNation Summit. The first of the JDRF TypeOneNation Summits will be taking place on January 20, 2018 (Middle Tennessee and North Florida). The summit in my state will be happening as usual on the first Saturday in March (March 3) in Bethesda, Maryland.

These are great gatherings that give those living with and caring for people with Type 1 diabetes the opportunity to learn the latest about technology and drug innovations, and interact with others from the tribe.

If you haven’t been to a diabetes event before, this is a great place to start.

CLICK HERE to find out more about JDRF TypeOneNation Summits nationwide.

JDRF Chesapeake & Potomac Chapter TypeOneNation Summit
Saturday, March 3, 2018 9:00 a.m. to 4:00 p.m.
Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road, Bethesda, Maryland
CLICK HERE for more information. Registration opens, probably, some time this week.

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Friends for Life events. Friends for Life will be coming back to Falls Church, Virginia in October of 2018. I’ll be looking forward to seeing old and new friends and learning more about a variety of topics with regard to cost, burnout, managing diet and exercise, and seeking support.

There are usually tracks for kids, teens, and adults at this gathering. If you can’t make the big FFL meetup in Florida in July, October in Northern Virginia is a very nice second option. If you live in the west, Anaheim in May is a very nice second option. If you live in the UK, Perthshire, Scotland in October is a super option. If you live near Toronto or in Niagra Falls, or anywhere else in Canada, Niagra Falls in November works pretty well too.

Friends for Life Falls Church
October 19 – 21, 2018
The Fairview Park Marriott
Falls Church, Virginia
CLICK HERE for more information on FFL Falls Church and the other 2018 Friends for Life events in Orlando, Anaheim, Scotland, and Niagra Falls, Ontario.
 
 
2018 is right around the corner. Get out your calendars and start planning! And if you have any conferences or meetups happening where you are in 2018, please let everyone know in the comments section below.

Note: the original version of this post listed the Anaheim Friends for Life event in April; the conference is actually May 4-6, 2018. Totally my fault.

By StephenS | Posted in Events | Also tagged , , , | Comments (1)

2018, you have big shoes to fill.

December 26, 2017 – 10:11 am

Well, it’s been a heck of a year, hasn’t it?

2017 has been the most full, and probably most fulfilling, of my years here at Happy Medium. This year has been quite a bit different from previous years too. Different in a good way.

January started with the beginning of my life on Dexcom, inserting the G5 and employing it as a useful tool in my diabetes management. Even if I complained about sensor and transmitter issues, and having to wear one more thing.

February included participation in the second Diabetes Podcast Week. I really love podcasting, and I wish I had more time to fit it into my schedule. I also shared a few notable quotes, and why they inspire me.

In March, I reported for the fifth time on what is now the JDRF TypeOneNation Summit in Bethesda. They’re getting better at bringing adults into the conversation. I also took the time to remind everyone that Nobody Ever Died from Obamacare.

April 1st marked the March for Health, in many cities across America. I was fortunate enough to be able to speak at the march in Washington, D.C., in the shadow of our nation’s capital. I also shared a story from my personal life that showed me how important it is to support your friends. It wasn’t about what I did… it was about what I learned.

Diabetes Blog Week returned in May this year, and it was wonderful, as always. Also in May, I took time to attend a public workshop at the U.S. Food and Drug Administration. I learned a lot about FDA’s Center for Drug Evaluation and Research, and the drug approval and after-market inspection process.

June brought about the rollouts of the new Accu-Chek Guide glucose meter, and (finally) the Dexcom G5 Mobile App for Android. I couldn’t be happier. I finished up the month with a meeting among diabetes friends, and it reminded me that we need each other now more than ever.

In July, I completed my local 5k run again, and did fairly well for a 55 year old who is a slow runner. I also attended another in the continuing #BeyondA1c discussions, and it was amazing, even if the information shared, at times, felt like I was trying to drink from a fire hose.

August posts included a note on conversations and my reaction to them. “It is always about enlightenment and being more comfortable being myself, and being myself with my diabetes.”

September was a hard month. I went through an unexpected emergency appendectomy, which included a very unexpected complication. Fortunately, I’m all better now.

In October, I shared my new role as a member of Maryland’s Advisory Council on Health and Wellness, and how this new role means I’ll be serving more than just the diabetes patients in my state. I’ll be serving all of the citizens of my state.

In November, I tried to remind everyone that while advocacy is often practiced with a little “a”, the effects of that advocacy can be very big indeed. I also went to a meeting at the U.S. Department of Health and Human Services, where I discovered that I was Enlightened, but Unknowing.

And in December, I’ve talked about doing a trial of the new-to-the-USA Freestyle Libre CGM. And I presented a list of 8 gifts that People With Diabetes could really use right now.

I would be remiss if I neglected to mention the two wonderful Diabetes UnConferences that took place in February and October. Or the fact that we’ve sent out another 15 or 20 Champion Athlete With Diabetes medals. These are feel good stories every single time. I also love hosting the Diabetes By The Numbers podcast, and hope to bring you more episodes in 2018. And thanks to Cherise Shockley and the followers on Twitter for the privilege and fun times shared while hosting some of the #DSMA chats throughout the year.

Thanks also to Christel Marchand Aprigliano for the honor and privilege of representing DPAC at Friends for Life events in July and October. We learn from heroes. We are supported by friends.

This is where I express my gratitude to you for visiting this space on a regular basis… I could do this without you, but it wouldn’t be as meaningful or as fun. Also, I hope that you have had a full and fulfilling year too. Finally, I want to strongly express my desire for all of us to work toward less division, less cost, more access, more support, and mostly, less burden of living with diabetes.

Goodbye 2017… you were a whirlwind, but a remarkable year.

Hello 2018… you have some pretty big shoes to fill.

By StephenS | Posted in Milestones | Also tagged , , , , , , , | Comments (1)

2017 JDRF #TypeOneNation #DC Summit.

March 13, 2017 – 9:22 am

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.

By StephenS | Posted in Events | Also tagged , | Comments (2)

2016 Type One Nation DC Summit.

March 22, 2016 – 9:08 am

Saturday, March 5th marked another terrific JDRF Type One Nation Summit in the D.C. suburbs, specifically, Bethesda, Maryland. Over 800 people living with diabetes and caring for people living with diabetes were in attendance, and they saw a number of presentations from people who really know what they’re talking about.

But let me back up for a moment…

For me, the day started with an adult T1D meet and greet. It was a terrific way to say hello to the other adult PWDs in attendance. When you have so many people in the same room, it’s easy to lose track of who is a PWD (Person With Diabetes) and who isn’t. We got around 45 minutes to sit and chat informally, and I was happy to make some new friends in Andre, Tom, Moe, and Tom. I was really glad to see this become part of the agenda. And I’m hoping it returns next year.

Our summit was moderated by Stefany Shaheen, writer of the book Elle and Coach, about her daughter (who lives with Type 1) and her service dog. She’s also co-founder and President of Good Measures, which designs healthy eating plans from registered dieticians that people can access via a digital platform.

All eyes on Stefany Shaheen and Bill Parsons

All eyes on Stefany Shaheen and Bill Parsons


Okay… once the meet and greet was finished, we were all given what seems to be a pep talk by Bill Parsons, who was a former member of the JDRF’s International Board of Directors and Chair of Research; and who is now Executive Director of our Greater Chesapeake and Potomac chapter. He didn’t sugar coat diabetes (ironic), and he didn’t hide from the facts. But he did convey JDRF’s passion for reduced burdens, better outcomes, and eventually, a cure that people working with JDRF are so famous for. It was a good table setter.

Bill’s talk really got everyone in the room jazzed, and then we got to the keynote address for the day, given by JDRF’s CEO Derek Rapp. He also spoke a little at the adult meet and greet. This is the first time I’ve heard him speak in person, and I was taken by the unassuming way he delivers the heart of what JDRF is all about these days. He wasn’t just giving us a laundry list of accomplishments, but rather a reason why the accomplishments are necessary, and the assurance that JDRF isn’t giving up until there’s a cure. Which is reassuring.

Then it was on to Howard Look, CEO of Tidepool. This guy is really, really smart. His Type 1 daughter is using a homemade artificial pancreas system that Howard designed himself. Cool dad. I’ve written about Howard and how he presents his take on device data and making it available in one place, and it seems like Tidepool, the non-profit out of California, is really on fire these days. His presentation also included a live demo of the Blip app that Tidepool has rolled out. It allows you to upload pump data, CGM data, meter data, and more and get real time analytics on your numbers. All your numbers. In one place. And if you choose, your doctor can too. It’s all free. If you have a Chrome browser, you can download the app right now at tidepool.org.

Howard also covered the latest from Tidepool, still in development, called the Nutshell app. It’s supposed to be able to grab data from your fitness tracker, allow you to input data related to meals, and again, see that data in one place. Brilliant!

Gary Scheiner was at the summit again this year. He gave a really super presentation this time on how to take the sting out of those pesky post-meal glucose spikes. He gave us some really simple steps that all of us can apply. Simple suggestions, like adding a little acidity (like tomatoes) to a meal to help cut into those high glycemic foods. And eating your vegetables first, which leaves less room in your stomach for the carby stuff that pumps up the BGs. I have to admit: eating my salad first means eating less bread and potatoes with my entree. It was a very useful talk.

Next it was Cynthia Rice, Senior VP of Advocacy and Policy for JDRF. She’s another person with a real passion for bringing the concerns of T1Ds to elected officials and commpany representatives. Interested in playing a part in JDRF advocacy yourself? We could really use you. CLICK HERE to learn more.

I wouldn’t normally talk about lunch, but I will this time because of two things: 1) The buffet had carb counts for everything! Very helpful, and I was glad to see it. And 2) I got to eat lunch with the intelligent, talented, and overall wonderful Kelly Kunik, who was leading one of the youth sessions earlier in the day. I also took a little time to check out the exhibition hall, full of organizations and companies with the latest products. Bonus bonus.

Exhibition hall

Exhibition hall


After lunch, it was Dr. Sanjoy Dutta, Assistant VP of Translational Development and International Partnerships. What does that mean exactly? Well, in this case, it meant that he was able to give the attendees all the latest on research and advancement toward better outcomes and (hopefully, eventually) a cure for Type 1 diabetes. Now I am up to speed.

Any diabetes gathering that includes Joe Solowiejczyk is solid gold. Joe Solo is an RN, a CDE (Certified Diabetes Educator), and author of A Type 1 Diabetes Guide to the Universe. His talk centered around the parent/kid with Type 1 interactions that can be such a challenge. Sometimes raw, always funny, he really made a case for how to make the most of those difficult situations. If you ever get the chance to hear Joe Solo speak, don’t miss it.

Finally, it was ViaCyte’s turn. Paul Laikind, PhD, President and CEO of ViaCyte came in person to tell everyone about the exciting advancements they’ve been able to achieve in the past year. Guess what? Actual patients, real people, are trialing this solution, and with a fair measure of success so far! We’re hoping this next year brings even greater success to this innovative solution.

After a question and answer session with the presenters, another JDRF Type One Nation Summit was complete again. For only covering one day, it sure covered a lot. Special thanks to Greater Chesapeake and Potomac JDRF’s Outreach Coordinator Alex Ade for her tireless work piecing everything together. It really was terrific. Want to hang with your fellow T1Ds and get the most up-to-date information on research, as well as help managing your diabetes even better than ever? If there’s a summit headed your way soon, you can find it HERE. And next time the JDRF Type One Nation Summit happens in my area, I will try to give you plenty of advance notice. You won’t want to miss it!
 

By StephenS | Posted in Events | Also tagged , , | Comments (2)
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