This summer, 20 people with type 1 diabetes will make an incredible journey. From June 3 to August 11, Team Bike Beyond is crossing the USA, cycling from New York to California. This week, meet the man who asked Beyond Type 1 to take a chance on the event, and the woman who said yes.
Stacey talks with cyclist Walt Drennan and Beyond Type 1 CEO Sarah Lucas about how the idea for the trip came about, the work that went into launching the ride and what they hope to accomplish along the way.
Each week during Bike Beyond, Diabetes Connections will bring you stories from the ride and profile a different cyclist. They're not professionals, just people with type 1 who wanted to take an extraordinary challenge. (There are actually 20 riders and one D-Mom along on this journey).
Stacey also shares a bit about the end of the school year & how the first year of middle school went for her son.
Plus, we talk about the summer diabetes conferences on the calendar like ADA, Friends for Life & AADE.
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As always, thanks for listening!!
Amy Tenderich is the founder and Editor-in-Chief of DiabetesMine, one of the oldest and most respected diabetes blog sites. Ten years ago, she wrote an open letter to Steve Jobs about diabetes technology. The letter went viral and Amy turned that energy and feedback into an international crowd-sourcing competition called the DiabetesMine Design Challenge. That led to the influential annual DiabetesMine Innovation Summit, and a biannual meeting of tech developers called the DiabetesMine D-Data ExChange, which is happening again June 9.
Stacey & Amy talk about what prompted her to write that letter and what she thinks has changed most since that time. Amy also shares her personal story, she was diagnosed as an adult in 2003, and explains what the D-Data ExChange is all about.
Also this week, Stacey shares a follow-up about a previous Community Connection, Willl's Way. We talk about getting diabetes gear to stick in the summer sweat and wet (listen to the episode referenced here) and get ready for Bike Beyond. Diabetes Connections is partnering with the folks at Beyond Type 1 to bring you stories from an epic cycling trip from NY to San Francisco.
Diabetes Connections is now available as an app!
As always, thanks for listening!!
This week, finding the humor in a life with diabetes. Stand-up comedian Chelcie Rice talks about the business of comedy and about using his own life with T1D, including eye surgery, in his act. Chelcie & Stacey also talk about his diagnosis as a young adult, how he uses the comedy circuit to raise money for diabetes causes and to educate about stereotypes.
Stacey also talks about Apple's "secret diabetes" plans and gives another tip of the week from a listener. How can you remember to take that extra vial of insulin from the hotel fridge? A very creative answer...
Neil Greathouse has a fantastic Instagram account ("The Betes") where he posts videos of life with type 1 diabetes. It's an entertaining look at the ups and downs of T1D, but Neil wasn't always able to find humor in his situation. Diagnosed while in the very last stages of Air Force training, he had to put aside a life-long dream. Stacey & Neil talk about the path he wound up taking and how he's used his creativity to help people along the way. Neil has also produced a short film: Type1Day1. In collaboration with Beyond Type 1 and released on Word Diabetes Day in 2015, it highlights the strength of the diabetes community.
Stacey also talks about a new summer NHL program for kids in Canada with type 1 and discusses the JDRF Walks in her area, happening this week.
Plus, a road trip to all the US National Parks to raise money and awareness around T1D.
Doris Hobbs is all about style and glamour. A fashion writer, model and blogger, she was diagnosed with type 1 diabetes as an adult, as was her sister. Their father has lived with T1D since age 2. Doris talks about where her fashion sense comes from, why she loves vintage looks and clothing and how looking good is an important part of good health.
Stacey also previews extreme athlete Roddy Riddle's "unfinished business." On March 10th Roddy will take his second crack at the 6633 Ultra, a grueling run that crosses the arctic circle.
Wil Dubois has written a weekly diabetes advice column for DiabetesMine for more than ten years. Called "Ask D'Mine," Wil answers questions with straight-talk, a blunt attitude and understanding that comes from experience. Diagnosed type 1 as an adult (and first misdiagnosed) he's also a diabetes author and community educator.
Stacey & Will talk about the column, Wil's diagnosis and about working in an area of the country where diabetes educators and endos are few in number and access. Wil also shares which columns generated the strongest reactions from readers.
This episode also features information about Diabetes Podcast Week. Plus a way you or your business can help the Spare a Rose campaign get life-saving diabetes supplies to children in developing nations while also getting a mention on the show.
Two very different guests this week, each of whom is educating about type 1 diabetes in their own way. When an FDA panel considered allowing a labeling change for the Dexcom CGM, 15-year-old Caroline Dorn testified about her experience. Dorn joined advocates and health professionals telling the panel why it should allow insulin dosing off the Dexcom G5 without a confirming fingerstick. Stacey talks to Caroline and her mother about why they traveled to Washington DC to do this and gets their reaction to the FDA panel approving the change (it now goes to the full FDA).
Brandon Denson was diagnosed with type 1 as a high school senior and went on to play college and professional football. He also had an appearance on American Ninja Warrior, with his insulin pump site and CGM sensor in full view. Stacey talks to Brandon about how he continues to inspire and his work with children both with and without type 1.
Plus, a close call for Stacey. What happens when the mail-order insulin box is mistaken for a frozen delivery? After almost ten years of dealing with type 1, Stacey explains you can still be sure to expect the unexpected!
When the Miss America Competition gets underway on September 11, our eyes will be on Miss New Hampshire Caroline Carter. Diagnosed with type 1 diabetes at age 10, her first passions were basketball and theater. Pageants came along later and she found great success, becoming Miss America Outstanding Teen New Hampshire in 2014 and then Miss New Hampshire 2016 in May.
Caroline talks to Stacey about wearing her diabetes tech (pump and cgm) during pageants and how she prepares for the long hours and constant travel. She talks about her friendships with Miss America 1999 Nicole Johnson and Miss Idaho 2015 Sierra Sandison, both of whom have T1D.
You can vote for Caroline as the People's Choice for the Miss America Competition in the link below. The winner of this voting moves onto the pageant finals.
Stacey also shares her advice for parents with children going back to school right now, including a letter/email she sent home to parents when her son was in elementary school.
Many parents of young children with type 1 diabetes have found childcare very difficult to navigate. But rarely are children with type 1 excluded, in writing, from daycare, camp and before and after school programs. That’s the case right now, though, in the US Military. An Army policy dictates that T1D kids can’t be cared for in those programs. Recently, the American Diabetes Association joined a lawsuit to try and change that. Stacey talks to Sarah Fech-Baughman, the director of litigation for the American Diabetes Association. Find out more about this case, what you can do if you have trouble finding childcare and Sarah’s unique connection to type 1.
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.
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."
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.
"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.
Three of the advocates behind the Spare a Rose charity campaign explain how it helps children with diabetes in the developing world. Kerri Sparling, Scott Johnson & Bennet Dunlap also play a few diabetes-news games with listeners. This episode is our contribution to Diabetes Podcast Week, a first of its kind effort organized by Stacey.
Manny Hernandez was diagnosed with type 1 diabetes as an adult; he was first misdiagnosed as having type 2. Now with Livongo Health, Manny co-founded Diabetes Hands Foundation in 2007. This week he announced he will return to the Board. Our Community Connection this week is Anja Busse, the girl who started the petition asking American Girl Doll to add diabetes accessories to their wildly popular line. Two weeks ago, they made a diabetes kit available in stores and online.
DPAC is a new effort to make it easier for people with diabetes to communicate with policy makers. Co-founder Bennet Dunlap explains how Diabetes Patient Advocacy Coalition works and how we can all take part. Our Community Connection is with Stacey's cousin, Aaron. He shares his experience at JDRF Children's Congress this summer.
In 2014, Sierra Sandison won the Miss Idaho pageant with an insulin pump clipped to her bikini, prompting the #showmeyourpump social media movement. We talk about her new book and online projects as well as take a look back at her incredible experience at the Miss America Pageant. In Community Connections, you'll hear about a new diagnosis, a new school, and a fortuitous meeting for the family of a first grader.