Tag Archives: jdrf

Got a phone? You’re an advocate.

You know, 2017 was quite a year in health care in the USA. So, what’s happening in health care in 2018?

Pretty much the same things.

Any successes that were achieved in terms of awareness on drug pricing, or access to care, or anything else have been met with continued explanations and excuses, but not any real progress. In all fairness, the rollout of Eli Lilly’s Basaglar and Novo Nordisk’s Fiasp have been positive developments.

But they won’t mean much if few can afford those, or if insurance companies continue to take away choice from patients by only allowing one brand of drug to be on a plan’s formulary, while forcing patients on the non-formulary brands to use something that may not work best for them (a practice known as non-medical switching).

In 2017, successes that came from helping to defeat the forces trying to rip apart PPACA (Obamacare) were hurt by repeal of the individual mandate, the provision in PPACA that reduced overall costs by requiring everyone to have coverage. That happened in the “tax reform” package passed and signed into law last month.

There are other questions, of course… what’s going to happen with the Special Diabetes Program, used to help fund research? What about CHIP, the Children’s Health Insurance Program, which covers many disadvantaged kids living with diabetes? It appears that the furor over partisan politics has left many previously no-brainer health care initiatives in limbo.

Buckle up, kids. It’s going to be another crazy year of fighting to hold on to things that we’ve already fought hard for many times. As a result of congress and the president blowing a trillion and a half dollar hole in the federal budget so they can help insurers and drug makers (among others who were already making more money than ever before), every single piece of spending is in danger of being cut to help make up the voluntary deficit they created.

Does this make you mad? It makes me mad. What do we do now?

First of all, we download the DPAC app. Diabetes Patient Advocacy Coalition will keep you updated on hot-button topics, and most of all, give you easy, quick ways to add your voice to the conversation. And wow, do we need your voice added to the conversation.

In addition, the American Diabetes Association and JDRF are doing a super job of advocating on our behalf, and they could use your support. They are also employing easy, quick tactics to help people living with and affected by diabetes join the advocacy effort from wherever they live. Get on their advocacy mailing lists and start communicating.

And don’t forget, you can always use your phone to actually speak with a person too. Contact your congressperson, senator, or even your president and let them know the score. Let them know you won’t be going away.

We don’t have to go all the way to Washington to share our personal stories. We don’t have to schedule time with a member of congress, hoping to get a chance to speak. We can speak now, loudly, and in unison, and easier than ever before.

If you have a phone, you are an advocate.

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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.

2016 Type One Nation DC Summit.

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!
 

Wordless Wednesday: The people you meet.

It’s no secret that the best part of going to diabetes events, wherever you are, are the face-to-face connections you make with others in attendance.

Last weekend, I was fortunate enough to attend the JDRF TypeOneNation Summit in Bethesda, Maryland. I was even more fortunate to meet Molly Schreiber.
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Molly lives with Type 1 Diabetes and rheumatoid arthritis, and she writes about both eloquently at her blog And Then You’re At Jax.

Often in our lives, it’s the people you meet that make things so great. So great to meet another friend. You should go check out her blog!
 

Thank you for your support.

It’s that time of year again… the time when riders are out on their two wheeled vehicles, getting ready for the ride of a lifetime. Or lifetimes. Yours and mine.

These riders are training for the JDRF Ride to Cure Diabetes, which is held in several locations throughout the year. Today, I’d like to feature five riders, most of whom you probably know already, especially since four are also diabetes bloggers.

A rider needs to raise at least $2,000 to be allowed to join one of these rides. That’s the kind of money I can never even hope to raise, so the least I can do is support the riders who can (or who are close). I hope you’ll click on the links to their pages and help support their rides. The money they’re raising will go toward research to help make a future with less, and then hopefully no, Type 1 Diabetes. Here they are, in no particular order.
 
 
– Our first rider does not write a blog. But he has been featured on other blogs, including this one back in February 2014.

Bob Parant will be riding in Burlington, Vermont again on July 25. Bob’s a 43 year veteran of living with Type 1, and he never lets it get him down. Read his inspiring story here. And:

Support Bob’s Burlington, Vermont ride
 
 
– Moira McCarthy Stanford writes a compelling blog at Despite Diabetes, chronicling her life as the mother of a young woman living with Type 1 Diabetes. She’s been a tireless advocate for a long time, and three years ago, she participated in her first Ride to Cure Diabetes. This year, she’s participating in two rides—LaCrosse, Wisconsin on August 15, and Death Valley on October 17.

The best part for Moira will be in August, when her daughter Lauren will join her for the first time. Their stories are amazing, and you can help them both get to their destinations by supporting their rides. Here are the links:

Support Moira’s LaCrosse, Wisconsin ride
Support Moira’s Death Valley ride

Support Lauren’s LaCrosse, Wisconsin ride
 
 
– Jeff Mather is a beast of an athlete. He writes a very interesting blog at Jeff Mather’s Dispatches, and right now, he’s diligently working on training for a complete ironman triathlon: 2.3 mile swim, 110 mile bike, and a full marathon. All in the same day. All with Type 1 Diabetes along for the ride. He’ll be taking a break from his training (who takes a break from training with a 100 mile bike ride?) on July 25, when he’ll be in Burlington, Vermont for his latest JDRF ride, one of several for him in the past decade.

Support Jeff’s Burlington, Vermont ride
 
 
Jeff will probably spend part of his time in Vermont riding alongside Victoria Cumbow. Victoria writes at her self-titled blog about life with Type 1, her life as a new homeowner and resident of Nashville, Tennessee, and her absolute love of transportation on board her bicycle. Her first JDRF ride was two years ago in Death Valley, and she completed the Nashville ride a year ago. This time, she’ll be in Vermont, after already completing a sprint triathlon and a half marathon this year. Just… wow.

Support Victoria’s Burlington, Vermont ride
 
 
Last, but certainly not least, is Alecia Wesner, writer at SurfaceFine. In years past, she’s been a top fundraiser for JDRF walks in New York, where she lives and works. This year, she’s decided to give up sneakers for bike shoes, and head to Vermont for her first 100 mile ride. When I read what she writes about it, I think she may be unsure if she’ll make it. Regardless of what she says though, I think she’ll do great. And she’s bringing her sister along for the ride too!

Support Alecia’s Burlington, Vermont ride

Support Paige’s Burlington, Vermont ride
 
 
I’m not sure I know what else to say except how much I appreciate what these athletes are doing to help all of us living with Type 1 Diabetes. I hope you feel the same way, and I hope you’ll either join them or donate to help them on the ride of a lifetime. Many lifetimes. Yours and Mine.
 
 
 

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