This summer, Nichole Nichols reached out to her state lawmakers for help navigating the system for her T1D daughter and other families having issues with Medicaid/Children's Health Insurance Program (CHIP) . Instead of guidance, she got a pretty rude response. Rep. Jeffrey Guice emailing "I'm sorry for your problem. Have you thought about buying supplies with the money you earn?" Nicki responded by publishing the email on social media and the diabetes community, then the national media, picked up the story. Rep. Guice apologized and Nicki received support directly from Medicaid and her state (but not from Guice). However, she says what happened next at the legislature was even worse.
In this episode, Stacey also talks about the new UK Prime Minister, Theresa May, who was diagnosed with type 1 diabetes three years ago.
Country star George Canyon was diagnosed with type 1 diabetes at age 14. At the time, all he wanted to do was be a pilot and serve his country. His dream had to change, but he never gave up on flying. Just this week, and due in part to George's efforts, Canada changed their regulations, allowing people with T1D to become private pilots. George was the runner up in the 2004 version of the TV show Nashville Star, he’s had several huge albums since and a big career before, but he’s also been to medical school and has spoken out about diabetes since he was diagnosed. Stacey spoke with him at the Children with Diabetes Friends for Life Conference, where he performed for a very appreciative crowd.
Rodney Miller is a power lifter and strongman competitor who was diagnosed with type 1 diabetes at the age of 4. Rodney’s story is all the more remarkable because he says he was always small for his age and only walked into a gym about 8 years ago. Stacey talks to him about the reasons behind his move to fitness and toward the extreme (like lifting cars!). Rodney also founded Bolus & Barbells, an event for people with diabetes who enjoy lifting and barbell sports. In this episode, you'll hear from many people who took part in Bolus & Barbells and wanted to express their gratitude to Rodney.
Stacey also talks about The Podcast Awards, Children with Diabetes Friends for Life conference and more!
Her videos bring humor, instruction and support to thousands of people with diabetes. Diabetic Danica, as she's known, has more than 14-thousand subscribers on her very popular YouTube channel. But she wasn’t always in a place to help others. When diagnosed at age 11, Danica needed a lot of help herself. We’ll talk about how she got from that scared 11 year old, to being a registered nurse and all those subscribers today.
In our community connection this week, we find out about Type 1 Diabetes Day at the Georgia State Capitol. Trip Stoner, who was diagnosed with T1D as an adult, talks about her effort to educate state lawmakers. She's joined by Dr. Jonathan Ownby from Atlanta Diabetes Associates.
Stacey also talks about next week's Children with Diabetes Friends for Life Conference and a new post by Scott Hanselman called, "The Promising State of Diabetes Technology in 2016."
Amanda Jo has been a professional entertainer since childhood. She's done everything from sing the national anthem at huge stadiums to performing opera and stage musicals. Amanda Jo was diagnosed with type 1 diabetes as a teenager, just after she had decided to follow her passion into country music. Now a singer-songwriter in Nashville, she collaborated last summer with American Idol’s Adam Lasher, who also has type 1, on The Needle Free Song, a diabetes anthem. We’ll talk about how that song came about, how it took a while for Amanda Jo to feel comfortable talking about her diabetes and how she manages type 1 on the road and even on stage.
Stacey also talks about Father's Day and how studies show that children whose fathers are more involved in their T1D management have better health outcomes.
Dexcom has released a few new studies about how people use their continuous glucose monotoring systems. Stacey talks about them with Tomas Walker, Dexcom’s Director of Clinical Projects and a certified diabetes educator. The two studies, released at the American Diabetes Association's Scientific Sessions look at how people use a CGM in the real-world, outside of a clinical setting.
For example, the FDA does not currently label Dexcom for use in making insulin dosing decisions; we are supposed to always confirm with a finger-stick. Of course, not everyone does this and Dexcom wanted to learn more about how and why. Another study looks at how setting the threshold alerts (the high and low alerts) within the system affect how people use a CGM and whether their blood sugar outcomes and A1Cs are affected.
In this episode, Stacey also announces the winners of the Pebble Time Smartwatch Giveaway (thanks to all who entered)!
She also talks about carrying supplies when in different theme parks, including going over the rules for carrying bags on rides at Disney World and Universal.
Ernesto Prado always wanted to be an astronaut but when he was diagnosed with type 1 diabetes as a teenager, that dream had to change. He found a way to work in the space program anyway, as a technical project manager at the Johnson Space Center in Houston. He says going to work every day is a dream come true, and he has even bigger goals for his career. Ernesto's journey wasn't easy, his family wanted him to keep diabetes a secret at first, and he had some very bumpy times in college. He shares what helped him get back on track, mistakes he's learned from and why he wants people with diabetes to keep pushing the boundaries of what others think they can do.
Our one year anniversary contest continues! Enter to win one of two Pebble Smartwatches at www.diabetes-connections.com. Contest closes on June 12, 2016.
Please vote for us in The Podcast Awards! Diabetes Connections made the final 10 shows in the country for the Health category. Voting determines a national winner. Please vote at www.podcastawards.com
Jason Adams is the co-founder of CGM in the Cloud, said to be the biggest type 1 diabetes group on Facebook. With more than 18,000 members and still growing, it's a place to share ideas, advice and experience with sending information from Continuous Glucose Monitors into the cloud. In other words, moving the CGM information onto web-based devices so that BG numbers can be viewed remotely in a variety of ways. Adams explains how his daughter's T1D diagnosis led him to become the first non-programmer using Nightscout (the first open source program to "free" the data from a Dexcom CGM) and walks us through the founding of CGM in the Cloud. Adams says he initially expected the group to serve about 15-20 local friends!
This episode also kicks off our one year anniversary contest! Enter to win one of two Pebble Smartwatches at www.diabetes-connections.com. Contest closes on June 12, 2016.
Please vote for us in The Podcast Awards! Diabetes Connections made the final 10 shows in the country for the Health category. Voting determines a national winner. Please vote at www.podcastawards.com
The FreeStyle Libre is a newer way to check blood glucose levels but is not yet available in the United States. The system consists of a sensor, with a wire underneath the skin, like a traditional Continuous Glucose Monitor and a controller. To see blood glucose readings the user holds the controller up to the sensor. Abbott Diabetes Care calls the Libre a Flash Glucose Monitor. Stacey talks to Abbott’s Senior Director of New Product Innovation, Joel Goldsmith. As of this airing, the Libre is available in Europe and is expected to launch in Australia in a few weeks. Stacey also talks about the end of the school year, looking ahead to Middle School for her son with type 1 and advice about 504 plans.
In early May, United Health Care announced that Medtronic would be its preferred provider of insulin pumps. Adults over the age of 18 who have UHC insurance will not be able to have any other brand of insulin pump covered. This set off lots of discussion within the diabetes community and prompted this special episode of Diabetes Connections. Stacey talks to Christel Aprigliano of Diabetes Patient Advocacy Coalition (DPAC), Gary Scheiner, a diabetes educator with Integrated Diabetes Services, and Mike Hoskins, managing editor of DiabetesMine. This episode was partially recorded on the video platform Blab.
Moira McCarthy Stanford and her husband, Sean Stanford, were recently honored by the New England Chapter of JDRF at the Boston One Night Gala. Moira is an author, speaker, dedicated diabetes advocate, mentor and educator. When her daughter, Lauren, was diagnosed 18 years ago, Moira jumped into the diabetes community and hasn't looked back. Stacey talks to Moira about this honor and about the dress she wore to the Gala. Seamstress (and type 1 mom) Darlene Winn crafted it and hand-embroidered dozens of names into the lining - names of "T1D heroes I love," says Moira. You'll also hear from Moira & Sean's daughters, Lauren and Leigh. They talk about what this honor means to their family and how their parents kept a balance of diabetes management, helping the community and living a full and happy life outside of T1D (Leigh does not have diabetes). Stacey also talks with the JDRF chapter about why they chose Moira and to the director of the JDRF Ride to Cure Diabetes. Moira more recently became involved in that organization and completed a grueling ride with Lauren last year.
What’s it like to attend a diabetes conference? What goes on, who can you meet and is it worth it? Stacey traveled to Friends for Life in Falls Church, Virginia this past April to try to give you the sense of being there. She speaks to organizers, speakers, kids and parents who attend, even vendors to find out why they travel to conferences and what they get out of it. Guests include: Children with Diabetes Founder Jeff Hitchcock, Keynote speaker Dr. Kenneth Moritsugu, former acting Surgeon General and diagnosed with type 1 at age 55, Tweens & Teens attending the conference and their parents, Harold Sanco who gets the kids moving with fun exercise and activity programs, Friends for Life Organizer Laura Billetdeaux, Animas Senior Territory Manager Suzanne Hollis, TrialNet's Karen Riley & Falls Church Mayor David Tarter who has a child with type 1 and was excited to find the conference was coming to his town.
Happy Mother's Day! This week, Stacey looks at motherhood &diabetes from two inspiring perspectives. Karla Reed is the motherof NASCAR driver Ryan Reed, diagnosed with type 1 when he was 17years old. Karla talks about what she's learned in the five yearssince - a time when Ryan moved across the country to start hisNASCAR career, became a spokesperson for the American DiabetesAssociation and got his first big Xfinity win. Ginger Vieira is amom with type 1 diabetes; her little girl Lucy is 18 months old.Ginger shares her experience of a carefully planned and managedpregnancy. She's now teaming up with her diabetes educator, friend,and fellow T1D mom, Jennifer Smith, to help other women with type 1who want to start a family. Stacey also shares a little bit abouthow a decision her mother made nine years ago, influenced the wayshe and her husband care for and think about her son's T1D.
Stacey talks with Dexcom CEO Kevin Sayer to mark the ten year anniversary of the company's first commercial product sale and to discuss improvements to customer service. Sayer talks about the long hold times and other issues customers have noticed recently, and explains why the recent growth of the company, along with a product recall, made those difficulties worse. We find out what Dexcom is doing to improve service and make the overall customer experience better. Sayer also answers questions about Android capability for Share and talks about other improvements coming to the system's receiver and inserter.
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Howard Look formed Tidepool after his daughter was diagnosed with type 1 in 2011 and, as a self-described "geek-dad" he was frustrated with the lack of access to her diabetes data. Tidepool is a platform for diabetes information and the apps that use it. It includes an uploader to get information off of devices like CGMs and insulin pumps and view them in a clear and accessible way. Look talks about the other features of Tidepool which help you make sense of what you're seeing. He also shares how his family uses Tidepool to make their diabetes management easier. Tidepool was honored at the White House last year and Howard Look shares his experience of being asked to sit on a panel with President Obama in February. Stacey also talks to a North Carolina father participating in the American Diabetes Association's' Tour de Cure. He got involved because his daughter's best friend has T1D and she wanted her friend to have a sleepover. The family got educated about type 1 and their involvement took off from there.
Dr. Ed Damiano is the developer of the bionic pancreas, a closed-loop system that uses a pump and a CGM to automate delivery of insulin as well as glucagon currently in clinical trials. Dr. Damiano got the idea for a dual-chambered system when his son was diagnosed with type 1 at the very young age of 11 months. Dr. Damiano talks to Stacey about the system, now called the "iLet" and about the new company formed to help bring it to market. Called Beta Bionics, it's a unique kind of company, perhaps the first of its kind in the diabetes sector. Dr. Damiano explains what a public benefit corporation is and why he felt it was necessary to form one in order to get the iLet from prototype to commercial product. In this episode, Stacey also shares the story of her family's first JDRF Walk almost ten years ago and how her daughter, who doesn't have diabetes, reacted to the idea of raising money for better research.
"The Human Trial" is a documentary in process about a potential new treatment for type 1 diabetes. Stacey talks to director Lisa Hepner about her life with type 1 and why she wanted to share this story. The movie features ViaCyte, a California biotech firm testing a stem cell treatment for T1D. They have FDA approval to test only the fourth embryonic stem cell-derived product in the world in people. As those human trials progress, Hepner and her crew are there to film the process. They hope to use the documentary to spread awareness and education about type 1 and about the encapsulation method. In this episode, we learn what ViaCyte is, all about encapsulation and why so many researchers and scientists are excited about these latest trials.
Sam Talbot shot to fame as a finalist on Bravo's Top Chef, then helped found the new diabetes advocacy group, Beyond Type 1. Diagnosed with type 1 when he was 11, Sam shares his love of healthy food, clean eating and managing diabetes despite a very busy schedule & lots of travel. Our Community Connection this week is health coach Daniele Hargenrader, better known at Diabetes Dominator. She's overcome her own health and life challenges with gusto and now helps others succeed.
A few years back, Scott Hanselman wrote a post some have called a seminal moment in the diabetes community. Called "The Sad State of Diabetes Technology in 2012," it sparked action, particularly in what's now known as the #WeAreNotWaiting movement. We talk to Scott about what he thinks about diabetes technology today, how he manages his own T1D and why a cross-country airplane trip is a perfect diabetes analogy. Community Connection this week is all about programs for adults with type 1. Camp Nejeda in New Jersey will host a weekend session in May. Information about that "Survive and Thrive Boot Camp," and ideas about how to begin something like that where you live.
(Note: due to some technical issues, "helpful links" for this episode may not appear until 24 hours after the episode goes live. Apologies for the delay)
Stefany Shaheen says she was skeptical when her family decided to try a Diabetes Alert Dog for their daughter, Elle. She shares their story and explains what to ask before deciding whether an alert dog is right for you. Shaheen's book, "Elle & Coach: Diabetes, The Fight for My Daughter's Life and the Dog Who Changed Everything" comes out in paperback this month. Stacey also talks to Dexcom Research and Development Senior Vice President Jake Leach about the new G5 mobile app for the Apple Watch and much more.
Roddy Riddle says, "Rule diabetes. Don't let it rule you." Diagnosed with type 1 at the age of 40, Roddy was already an international cyclist and didn't see any reason to slow down. He completed the grueling Marathon de Sables ("The Toughest Footrace on Earth") and is competing right now in the 6633 Ultra, a 350 mile race that touches the Arctic Circle. Marina Tsaplina is just as tough, but in a very different way. She wants us to think about diabetes, and about all of health care, as a very human story. We talk to Marina about her organization The Betes, what puppets have to do with diabetes, and about "The Patient Voice" event.
This month, Pediatric Endocrinologist Dr. Stephen Ponder marks 50 years since his own diagnosis with type 1 diabetes. His book and method "Sugar Surfing" use CGM technology to practice dynamic diabetes management, anticipating where blood sugar numbers will be rather than reacting to where they've been. Dr. Ponder also answers questions from parents about independence, A1Cs and fear.
Ryan Reed started racing at age 4, but when he was diagnosed in 2011, he was told those days were over. Instead, Ryan found another doctor and surrounded himself with a "diabetes pit crew" of support. 5 years later, we talk about NASCAR, type 1 management and his Drive to Stop Diabetes partnership with the ADA. Stacey also talks about whether to celebrate "diaversaries" and brings up important information about a Dexcom alarm notification.
"My Diabetes Secret" is a place to share thoughts, frustrations and experiences online while staying anonymous. Creator Christopher Snider is also behind #DayOfDiabetes on Twitter and hosts the podcast "Just Talking. Diagnosed with type 1 in college, Snider shares why social media is important to his diabetes management and why he'd like to help other health communities with the "My Disease Secret" platform. Stacey also shares some advice she's been given for dealing with Dexcom-related skin issues.
Sam Fuld returns for his tenth season of Major League Baseball this year, now with the Oakland A's. He was diagnosed at age 10 and found inspiration in established Major League players who had type 1. Now Fuld holds a yearly sports camp for kids with diabetes where all the coaches have T1D as well. Stacey also talks with Yoga instructor Rachel Zinman, who was misdiagnosed for six years! She says it was a relief to finally find out she had type 1 diabetes.