Diabetes Connections | Type 1 Diabetes

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.

In 2013, Bryan Mazlish created a home-made artificial pancreas system for use by his wife and son, both of whom have type 1 diabetes. Because Mazlish preferred to stay anonymous, a reporter dubbed him "Bigfoot." In 2015, Mazlish went public and partnered with two others to create Bigfoot Biomedical. Their goal is to bring this technology & other products to market in order to improve the lives of people with T1D. In our Community Connection, Stacey finds out about Hockey Fights T1D, a new JDRF fundraiser in upstate NY sparked by a two year old's diagnosis.

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.

Julie Allred was diagnosed with type 1 diabetes at age 10, a generation ago. Told she wouldn't live past 30 and would never have children, Julie proved her doctors wrong but eventually had so many low blood sugars that she couldn't drive or leave her house unaccompanied. Two islet cell transplants as part of a clinical trial have changed her life. Julie is also a school nurse; she shares advice for parents on working with school staff.

A conversation with Dexcom Chief Technical Officer Jorge Valdez. Stacey asks about some milestones users of the G5 transmitter are waiting for, Dexcom's partnership with Google and what the future may bring. Community Connection this week is with Hope Mangiafico, diagnosed type 1 as a child, she found her voice at Diabetes Camp. Now she helps people with diabetes reach exercise and fitness goals.

A bonus episode featuring a conversation with top executives at Johnson & Johnson Diabetes Care Companies (parent company of Animas). John Wilson is the Worldwide Vice President, Insulin Delivery and Krishna Venugopalan is the Worldwide Director, Research & Development, Insulin Delivery. They talk to Stacey about the significance of this approval, about Animas's agreement with Dexcom and what's coming next as that company moves forward with the Share, G5 and G6 versions of their CGM.

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.

An IRONMAN Triathlon includes a 2.4-mile swim, a 112-mile bike ride and a marathon 26.2-mile run, raced in that order and without a break. Add type 1 diabetes to the mix and you've got a challenge few people ever try. In its first year, the Riding on Insulin Endurance program saw 63 athletes complete IRONMAN Wisconsin and raised $125,000 for the group's camps. Stacey talks to T1D IRONMAN Harry Thompson, as well as Michelle Alswager, the group's development director and an IRONMAN herself. Michelle also shares the story of her son, Jesse. Diagnosed in 2000 at age 3, Jesse died ten year later, when he was just 13. All JDRF Rides for the Cure now mark mile 23 for Jesse, and for everyone who's lost a life to type 1 diabetes.

Wrap up 2015 with a look back at our top episodes of the year. Listen to excerpts from interviews with Nightscout co-creator John Costik, Nightscout Foundation President James Weddington & contributor Kate Farnsworth. You'll hear from Moira McCarthy, the author of Raising Teens with Diabetes, Richard Vaughn, who marked 70 years of living with type 1 this year (he was diagnosed in 1945!) and Dexcom Chief Technical Officer Jorge Valdez. To hear the full interviews - or any of the interviews from 2015 - visit www.diabetes-connections.com/archives/ Happy New Year! -Stacey

Robyn Adams has a son, a husband, and a father-in-law with type 1 diabetes. She's also a Disney Planner and has advice on how to navigate a trip to Disney World (or anywhere) with diabetes. You'll also hear from Rob Myers, organizer of "Running for Ruth." His mother died last year from complications of type 2 diabetes and now he's honoring her memory by raising money to send kids with all types to diabetes camp. Stacey also talks about Diabetes Podcast Week, a project she's organizing for the week of February 1, 2016.

In Type ONEderland, Finding Hope in the Hard Places, Elizabeth Maxon tells the story of the surprises found when life does not go according to plan. Her daughter was diagnosed with type 1 diabetes and a thyroid disorder at the age of 5. Stacey also talks with Carolina Panther Kyle Love. Cut by the Patriots two years ago when he was diagnosed with type 2, Love shares the challenges of managing his professional weight (300+ lbs) with managing his diabetes. Stacey also explains why, on his 9 year anniversary of diabetes, her son wants to share an idea called #DFriends.

Author Andrew Deutscher talks about his book, Typecast, Amazing People Overcoming the Chronic Disease of Type 1 Diabetes. It's a look at how some people are able to turn their diagnosis into motivation or inspiration, allowing them to achieve incredible goals. Our Community Connection features Check B4U Drive, a safe driving program aimed at teengers with T1D. And this week marks nine years since Stacey's son was diagnosed. She explains what she'd go back and tell herself on that day if she had the chance.

Win Jerry! Jerry the Bear is an interactive teaching toy for children with type 1 diabetes and food allergies. Stacey talks to Jerry's inventors, Aaron Horowitz & Hannah Chung who co-founded their company, Sproutel, while still in college. This year they were honored at the White House. Our Community Connection this week focuses on Project Blue November, a grass-roots social media campaign that curates T1D ideas & inspiration. Listen to find out how to enter to win Jerry the Bear (contest closes 12/8/15).

Beyond Type 1 got quite a buzz when they launched earlier this year with their "Living Beyond" Instagram campaign and "The Drop Spotted" on social media. Stacey talks with CEO Sarah Lucas about the ideas behind Beyond Type 1, and finds out how celebrities with diabetes like Sam Talbot and Nick Jonas became co-founders. Sarah's daughter, Mary is the community manager of Beyond Type 1. She shares her story and talks about what the community means to her.

Diabetes Forecast magazine's Kelly Rawlings shares the American Diabetes Association's message for November. Kelly also talks about how, as someone with T1D, she balances bringing news for and about people with all kinds of diabetes. In our Community Connection, Stacey interviews syndicated radio host Ramona Halloway about her family's struggle with type 2 and her decision to have gastric bypass surgery.

How do you know which insulin pump is right for you or your child? Certified Diabetes Educator Linnet Steinman walks us through the options and gives advice about how to make the best choice based on individual needs. Stacey kicks off Diabetes Awareness Month with info about Diabetes Hands Foundation's The Big Blue Test and JDRF's T1D Looks Like Me campaigns..

When John Costik figured out how to display his son's Dexcom CGM readings on any web-based device, it was a breakthrough that forever changed how we're able to look at diabetes. John talks about the collaboration that followed, leading to Nightscout and CGM in the Cloud. This week's Community Connection is Kent Schnakenberg, who's vowed to take part in every JDRF Ride this year and travel through all 48 continental Unites States. Stacey talks about how her family manages Halloween and explains their strategy has changed through the years.

Dexcom's Chief Technical Officer Jorge Valdez answers questions about their new G5 Mobile CGM, the partnership with Google and what's next for Continuous Glucose Monitoring technology. Stacey also talks about CGM/Medicare legislation in front of Congress.

American Jeremy Larsen has traveled the world and currently lives in Japan. He started the 70-130 project (the "perfect" blood sugar range) to show that type 1 diabetes shouldn't hold anyone back from travel. Our Community Connection features a family that loves to visit exotic locations and their advice for taking diabetes on the road.

Speaker & author Moira McCarthy shares an emotional experience from a recent JDRF Ride to Cure Diabetes. Moira has been on several JDRF rides but this was the first with her daughter, Lauren (diagnosed T1D at age 6). Stacey also talks to Kady Helme, who works at JDRF and recently took part in an artifical pancreas trial.

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.

Worried about alarms she couldn't hear, Dana Lewis and Scott Leibrand "hacked" into the programming of her CGM. What they learned led them to a do-it-yourself closed loop artificial pancreas system that Dana has been using since December 2014 (and which she wore during their wedding in August). We find out how they did it, why they make their methods public and what it may mean for the future of diabetes management. In the Community Connection segment, we hear about LADA (Latent Autoimmune Diabetes in Adults).

Named the 2014 Diabetes Educator of the Year by the American Association of Diabetes Educators, Gary Scheiner answers questions from our social media feeds. Gary is the owner and director of Integrated Diabetes Services and has lived with type 1 since 1985. Also this episode, Stacey shares her frustrations with trying to manage and learn about diabetes while sometimes not knowing even what questions to ask ("not knowing what we don't know").

"A Mile in My Shoes," is a fun, interactive project by diabetes nurse educator and family therapist Joe Solowiejczyk. Joe's been living with type 1 diabetes for 50 years. The Community Connection this week features Will's Way, which helps families with health insurance pay for diabetes supplies. We talk with Lisa, who started the non-profit after her son Will was diagnosed with type 1. This episode features a giveaway for "A Mile in My Shoes." Contest entries close on 9/13/15 at midnight.

Richard Vaughn was diagnosed with type 1 diabetes in 1945 at the age of six. This month, he marks 70 years of living with T1D. Vaughn shares how diabetes management and tools have changed over the years and why he thinks he's been able to stay healthy. Our Community Connection features a woman who's also lived a long time with type 1 (40 years) but still encounters some awkward situations. She shares an uncomfortable moment she had while traveling and how she dealt with it.

Diabetes Hands Foundation's slogan is "no one with diabetes should feel alone." You'll hear from DHF interim executive director Melissa Lee. She did feel alone with her diabetes for a very long time and shares how she came to find support. This episode also features blogger and speaker Kelly Kunik about I Wish People Knew That Diabetes. It started as a hashtag on Twitter and is now blossoming into an exciting new campaign.

Sebastien Sasseville was diagnosed with type 1 diabetes when he was 22. Since then, he has climbed Mt. Everest, finished multiple IronMan races, run across the Sahara Desert and, last year, completed an incredible run across Canada. It took 9 months and equalled 180 marathons. We talk about his motivation (he says he's not really an athlete!) and what he hopes those of us who aren't climbing mountains or running marathons can learn from his exapmle

Going to college is stressful enough for most students and diabetes just adds another challenge. Stacey talks to Mindy Bartleson from the College Diabetes Network about resources to help students, families and even roommates. In the Community Connection, you'll hear from a sophomore student-athlete who explains what advice he'd give himself as a freshman. And Stacey shares something she wrote about diabetes, numbers and emotions that hit a nerve on Twitter.

Stacey interviews Natalie Irish and Chase Pelletier, both part of the Animas Heroes program. Irish is a gifted artist who one day decided to paint in a unique and remarkable way. She "kisses" the canvas, using her lips to create her art. She appeared on Conan O'Brien show with her bright pink insulin pump in 2012. Her portrait of Conan still hangs in his show's green room. Pelletier is a 19 year old touring car driver who's already setting records. He's part of the Drive 4 Diabetes program as well as competing in the F2000 open wheel racing series in Canada, and the Pirelli World Challenge Touring Car-A racing series in the U.S.

Back to school time (almost)! Stacey talks to Crystal Jackson, with the American Diabetes Association's Safe at School program. She has information on legal rights, common challenges and advice on forming a partnership with your child's school. You'll also hear from a mom whose child with diabetes attends a charter school. Stacey shares ideas for setting goals that make sense at the elementary school level.

Moira McCarthy is the author of Raising Teens With Diabetes: A Survival Guide for Parents. She speaks frankly about the challenges she and her daughter faced, after years of being a "model" diabetes family. This episode also features an adult with type 1 who looks back at her self-described rebellious teen years. Plus, what I learned recently about talking to my ten year old that I hope will help in the "challenging" teen years to come:

The Nightscout Project is an open-source DIY project that lets users see blood sugar numbers from a continuous glucose monitor (CGM) on a smartphone, computer, tablet or Pebble watch. It came on the scene in 2013 and continues to grow at astonishing speed. Stacey speaks to Kate Farnsworth, a Pebble watchface designer for the group and James Wedding, president of the Nightscout Foundation. This episode recorded at the Children With Diabetes Friends For Life conference.

16 years ago, Laura Billetdeaux logged onto a diabetes chat room and asked if anyone wanted to meet up with her family during their vacation in Florida. That action sparked what would eventually become Friends For Life, the largest diabetes family conference in the world. Stacey talks to Laura about what happens at the annual gathering and what it continues to mean to her family. In Community Connection, advice from a mom who couldn't find the kind of support group she wanted for her toddler son, so she created it herself.

Stacey talks with Justin Thomas, the director of Camp Carolina Trails, an American Diabetes Association camp and Galen Horton, a staff member at the camp who works with Animas Corp. Both men were campers at the program (Galen was Justin's counselor once upon a time) and have a lot to say about why the experience is so meaningful and why they keep coming back. This summer marked Galen's 30th! You'll also hear from a once-reluctant camper who turned her experience around. This will be Sara's 9th year at Camp Kudzu. Stacey shares her son's experiences at "regular" non-diabetes day camp and sleep away camp.

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.

Stacey talks to blogger, author and speaker Kerri Sparling, of Six Until Me. Kerri talks about the power of ordinary success with diabetes, how she decides what to keep private and the Spare a Rose charitable campaign. We'll also hear about a connection at theater camp and Stacey has some advice if you're looking to connect with other people with diabetes in real life.

Stacey talks to Jeffrey Brewer, former head of JDRF, now CEO of Bigfoot Biomedical. We'll find out how he hopes to simplify diabetes management through technology and the story behind the Bigfoot name. Stacey also hears about a teenager's first trip away from home and how a diabetes connection on the road made a big difference. Plus, what to do this summer to make school better for your child with diabetes this fall. Episode Transcription: Stacey Simms 0:00 Hi, this is Stacey. Just a reminder my podcast is not intended as medical advice. I am not a doctor. If you have medical questions, please talk to your healthcare provider. Announcer 0:13 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:17 This week, I'll talk to Jeffrey Brewer, the former president and CEO of JDRF. Now he's part of a new venture, Bigfoot Biomedical that aims to simplify life for people with Type One Diabetes. Jeffrey Brewer 0:30 I pick up my smartphone, and I can contact people that I haven't seen in 20 years through Facebook instantaneously, I can press a button and have a car show up and take me anywhere I want within three minutes. And yet, if I'm looking for advice or help on self-dosing this dangerous drug called insulin, I'm completely and totally disconnected from the rest of the world. And that just seems crazy. Stacey Simms 0:55 Plus, a school competition means the first time away from home for a teenager: 12 hours away for a whole week, a surprise diabetes connection makes a big difference. Jennifer 1:05 She texted me and you know, I could hear the excitement, even in the text. She's like, "Mommy, announcer has Type One." And I'm like, "Are you kidding me?" I said, "How do you know?" She says, "You know, kind of sitting near him and I saw him announcing and I spotted a pump." And she was like, "Oh my god, one of me!" Stacey Simms 1:21 And the most important thing you can teach your child with diabetes now, to make school easier in the fall. It all starts now on Diabetes Connections. My guest today is breaking new ground, the CEO of JDRF. Formerly, he left that group in 2014 and founded a new venture later that year. It's a diabetes technology startup called Bigfoot Biomedical. We will talk about the story behind the name. And I'm excited to talk to Jeffrey Brewer. Jeffrey, welcome to Diabetes Connections. Jeffrey Brewer 1:54 Thanks very much. Thanks for having me. Stacey Simms 1:56 Oh, it's great to talk to you, you know, I was on the board of our local JDRF chapter from 2007 until about 2013, when I cycled off. And of course, you heard your name so much before and after that, it's so nice to chat with you. Um, do you mind telling us your family's story? Your son, of course, has Type One, when he was diagnosed and how he's doing now? Jeffrey Brewer 2:18 My son was diagnosed in 2002, September 19. For people affected by this disease, especially with children, you remember exactly when and where. We had just moved to New York City and my son was a couple weeks into a new school. And he was at that point, seven years old. Sean is now 20 years old. And so, we have been living and he has been living with this disease for over 13 years. And my involvement in various efforts and initiatives, starting with my volunteer work at JDRF. And then my service on the international board of directors and and then leading to my executive service as the CEO of JDRF for the last four years, all motivated by my desire to see that he lives the best, healthiest, and safest life. And I think there is a big opportunity that we have on the way to a cure for this disease, to improve life, health, and safety through the use of technology. And I've been pursuing that pretty aggressively since the very beginning. Stacey Simms 3:27 But let's talk about that. I mean, you know, when you're talking about moving forward and actually getting to a cure, and all of the advances that are happening and we want to happen as people affected by diabetes, let's let's talk about Bigfoot Biomedical. First, the name, you know, as you listen, you may be aware, there are a few people in the U.S. who are basically putting together their own artificial pancreas, using existing technology: pumps and CGMs and things like that working together. Some people are are better known and have put their name on their ventures, but others are not so well known, including one family that a reporter named "Bigfoot" because they were so hard to find. Do I have all that right? Jeffrey Brewer 4:07 You do, you do. Bryan Mazlish, who is one of the founders of Bigfoot Biomedical, as long as two and a half years ago, had begun experimenting with a prototype system for the automation of insulin delivery. One which has been operating continuously for the last two years now on his wife, who has Type One Diabetes, and also his now nine year old son. Stacey Simms 4:36 Wow. It's incredible for somebody like me who has a child with a CGM, a Continuous Glucose Monitor and a pump to think tha

Stacey talks about the Diabetes Unconference with Christel Marchand Aprigliano of The Perfect D. We also hear from a mom who made a funny diabetes connection in her local Target and, in this first episode, find out more about Stacey's story and what led her to create this podcast.