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The Mure family won 50-thousand dollars in the Great Christmas Light Fight on ABC and gave it to JDRF. Stacey talks to Joe Mure who wasn’t sure he wanted to compete at all. He hung up twice on the producers! Joe’s son was diagnosed with type 1 at age 5 and we get the story behind the Little North Pole and the network competition.
If you'd like to donate to JDRF via The Little North Pole, click here
Plus, who is the Hangry Woman? We talk to Mila Buckley about finding support for a younger person with type 2 diabetes.
Also this week, Stacey reports that CW Star Austin Basis (Beauty and the Beast and more) has published his comic books, The Kinetix. We talked to him earlier this year when the stories about a superhero teem of kids with disabilities was launched on Kickstarter. Listen to that episode here.
And, with this last scheduled show of 2018, a look back at an amazing year.
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Stacey Welcome: We talk about the Kinetix from Austin Basis
Interview with Joe Mure about the Great Christmas Light Fight
26:30 Interview with Mila Buckley - The Hangry Woman
47:30 Looking ahead to 2019 (sneak peek at upcoming shows)
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Advocate and author Quinn Nystrom was diagnosed with type 1 as a young teenager, just a few years after her little brother developed T1D. Her high school prom date inspired the title of her book, "If I Kiss You Will I Get Diabetes."
Quinn shares her story, talks about running for office and tells us what's next.
Plus, MySugr CEO Frank Westermann on how his company tries to help make diabetes suck less (and we get Stacey's reaction to that motto).
Want Stacey to speak at your event in 2019? Email stacey@diabetes-connnections.com or connect on any of our social channels.
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2:00 Stacey welcome
3:00 Stacey shares podcast reviews (one is a question about the Facebook group, link below)
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5:00 Scott Johnson interviewed Stacey last week via FB live. You can watch that here or read the transcript! Stacey also shares the story of the first time she met Scott at the Friends for Life conference.
8:20 Interview with Quinn Nystrom
47:30 Interview with Frank Westermann
57:40 Stacey talks about events for next year
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It's Stacey's family's 12 year diaversary. Benny was diagnosed the first week of December in 2006 just before he turned two. This week, Stacey takes a look back and gives an update on how they're managing now. There are significant changes to share; Benny started an untethered routine about two months ago.
Learn more about untethered here. Also known as POLI (Pumping On Long Acting Insulin) untethered means you take long acting insulin like Tresiba or Lantus once a day but also use the pump. Stacey explains more.
Also this week, one of the biggest changes in the past 12 years has been the rise of smart devices. Stacey talks about Klue, a new app that can sense when you’re eating and help you with boluses! Check it out and sign up to Beta here.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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1:30 Stacey welcome & reads reviews
6:40 Stacey reflects on life in 2006 when Benny was diagnosed
9:40 Diagnosis story
17:00 Big recent changes we've made: switch from Animas to Tslim last year. Got Basal IQ in late August. Started Untethered management in October.
Listen back to our Ten Year episode featuring Stacey's whole family
35:15 Interview with Klue's Katelijn Vleugels
46:20 Some programming notes, two more shows left in 2018 - no show the week of Christmas. Book Stacey for events for 2019 (the calendar is already starting to fill up!) email stacey@diabetes-connections.com
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We've got a parent's survival guide when it comes to teenagers and type 1 diabetes this week. What to do when your child doesn’t want to hear about diabetes anymore and hears your helpful advice as just plain nagging.
Jill Weissberg-Benchell has a PhD in psychology and is also a certified diabetes educator. We discuss talking to your teen, listening to your teen and strategies to get through this oh-so-interesting time in their lives. It’s not just about attitude. Their bodies are making it really difficult for diabetes.
Plus, remember the glucose necklace? It looks sort of like a glow stick necklace but contains sugar for lows on the go? They’re going to be ready to go by the end of year and we have a way to get yours for free. Head over to Glucose Revival and sign up for their newsletter (Look for "Get Updates") to get on the list for 1000 free necklaces. Diabetes Connections is not affiliated with Glucose Revival - be aware that you are sharing your email information in exchange for this free offer.
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1:45 Stacey Welcome - Stacey reads a recent Apple Podcast review and talks about events for 2019 - email stacey@diabetes-connections.com to request Stacey as a speaker.
5:20 Interview with Jill Weissberg-Benchell
Stacey talks about Raising Teens with Diabetes from Moira McCarthy (link to buy from Amazon)
55:45 Know Better: Glucose Revival Necklace (link back to our original interview with them)
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Loop - the DIY app that helps with automated insulin delivery - may become the first do it yourself diabetes solution to go to the FDA. But why did Tidepool decide to take on this challenge? Stacey talks to Tidepool CEO Howard Look about what this decision means, how it’s going to work and what it means for those interested in DIY but not willing to use out of warranty pumps or do a lot of programming ourselves. And of course we’ll explain what Loop actually is.
Read the Medium article Howard mentions here
A French company announces they’re a step closer to approval of their closed loop – we’ll talk about Diabeloop
And Pandora gets into the podcasting space. Diabetes Connections is one of the few shows selected for the first launch!
Listen to past episodes where we talk to DIY, OpenAPS and We Are Not Waiting advocates and experts.
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1:30 Stacey welcome & explains Loop
6:50 Interview with Howard Look
30:30 Diabeloop explained
35:00 Pandora and podcasts
Become part of the Pandora's Beta testing as a listener
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Carl Armato was diagnosed with type 1 as an infant, he’s now the CEO of Novant Health, a large hospital system. But Carl didn’t share his diagnosis with many people – partly because of a reaction he got from a coach in middle school – who cut his playing time when he found out. Now very open about his T1D, Carl has written a book, A Future With Hope, that tells the story of his diagnosis, growing up in the days before home meters and how his family rallied around him.
Plus, this week marks World Diabetes Day! Ever wondered why the symbol is a blue circle? We’ll explain.
And Stacey gives a sneak peak of her new project: Club 1921!
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1:40 Stacey welcome, talks about recent Facebook issue with podcasts. If you listen via Facebook please consider switching over to a podcast app or the homepage
6:00 Interview with Novant CEO Carl Armato
57:33 The Blue Circle explained
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Andrew Armstrong was diagnosed with type 1 diabetes in high school, when college scouts were already coming around. He had the unique experience of being recruited by someone who knew exactly what he was going through - one of the coaches he met had a daughter with T1D.
Andrew is now in his third year at SU and linebacker coach Brian Ward still supports him, as does Athletic Trainer Tim Pike who lives with type 1. Andrew shares his story plus tips and advice for student athletes.
We taped this episode in front of JDRF families at Syracuse University. They asked Andrew questions and then Stacey put the kids in front of the microphone.
And, this diabetes awareness month, Stacey takes a moment to talk about Project Blue November, a clearinghouse for online diabetes news, events and inspiration.
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1:50 Stacey welcome
5:00 Interview with Andrew Armstrong
Interview with JDRF CNY Ambassadors:
32:00 MP
34:30 Bella
37:30 Logan
40:00 Amie
51:00 Project Blue November
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This bonus episode is about running, community and finding a way to make a difference. It's a great way kick off Diabetes Awareness Month.
Stacey worked with Tammy Lowry in her previous job at a radio station. In 2015 Tammy's son Jackson was diagnosed with type 1, just a few weeks before they were both set to run a half marathon to benefit children's cancer research. Jackson's diagnosis took him out of that race, but it led to bigger goals.
You can read about that first year here.
Read about Tammy & Jackson now.
Learn more about the Isabella Santos Foundation
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Stacey talks to Jen Block from Bigfoot Biomedical with a look at why they plan to be more than a pump company, offering help navigating healthcare and a subscription service. Jen is the VP of Medical and Clinical Affairs. She was diagnosed with type 1 her sophomore year in college, during a cross country road trip. Now a Nurse Practitioner and Certified Diabetes Educator, she shares her story and details about Bigfoot.
In our Know Better Segment, one of the very first studies about LADA – sometimes called type 1.5. We’ll tell you what researchers learned.
And Stacey shares a story about a recent wedding where she made one T1D friend and embarrassed herself trying to track down another.
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1:40 Stacey Welcome
4:50 Interview with Bigfoot's Jen Block
49:30 LADA study
52:30 Stacey doesn't have diabetes radar but she is very embarrassing when she thinks she does..
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Once called deliberately non-compliant, this week's guest is all about the importance of language when it comes to diabetes. Renza Scibilia has some strong opinions about why words really matter.
We’ll talk more about her non compliance – it has to do with her Looping, using one of the do it yourself options - and about her diagnosis as a young adult. Plus, information from Diabetes Australia and The Grumpy Pumper
In our Community Connections this week, the Type 1 Renegade Run is making noise in the Northeast. The event this past weekend marks the 7th year of this obstacle course and block party.
And a closer look at keeping insulin at the right temperature from the pharmacy to your fridge. JDRF, ADA & Helmsley Trust are teaming up to study this issue.
Did you see Chris Ruden pop up in the NBC Titan Games promo?! Here's our interview with the T1D body builder from last year.
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1:30 Stacey Welcome - Syracuse and DC round ups, looking ahead to the DiabetesMine Summit
4:00 Interview with Renza Scibilia
39:40 Interview with Renegade Run's Tyson Sunnerberg
52:00 Know Better: insulin study
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Darrell Greene is one of the first people to try Eversense, the implantable long-term CGM from Senseonics. With Eversense, a doctor places the sensor in the upper arm where it stays for three months. More information here.
Darrell explains what the experience is like, how the sensor feels under the skin and shares his story of living with T1D since his early 20s. Darrell is a local news anchor in Memphis, Tennessee and has some fun stories to share about working in the industry.
Watch the video of Darrell and his doctor explaining Eversense. Darrell even taped the procedure!
Our Know Better segment this week features information about Lilly's faster acting insulin, moving along through the aptly named PRONTO studies.
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1:30 Stacey welcome - information about the podcast on YouTube
5:15 Interview with Darrell Greene
49:00 Information on Lilly's faster insulin - Pronto Studies
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JDRF’s Chief Mission Officer Aaron Kowalski talks about what’s new and next in terms of research. He also gives us perspective on what’s come before including how JDRF helped fund the CGM and hybrid closed loop landscape that we’re all very familiar with now, but that almost didn’t happen.
Aaron explains what else JDRF is looking at these days, including glucose responsive insulin. He shares his family's story as well - he and his brother both have type 1.
Plus.. how do you get rid of needles and Sharps containers? The rules aren’t the same in every state or even every city. Put your Zipcode in at this website and find out what's recommended where you live.
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1:30 Stacey welcome
4:10 Interview with Aaron Kowalski
52:30 Information about Sharps Containers from SafeNeedleDisposal
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The Fox TV show "The Resident" takes on type 1 diabetes and gets it right! This week's episode "The Prince and the Pauper" features two plot lines about diabetes. Stacey speaks with the co-executive producer Andrew Chapman on why this issue and why now.
Chapman lives with LADA (Latent Autoimmune Diabetes in Adults) also known as type 1.5. He tells Stacey there are two other people with diabetes on the writing staff.
See Chapman's play 99 Tropes in Seattle later this year!
Learn more about LADA in previous episodes:
Disney Channels' Jennifer Stone Shares Her Story
Game show episode: Wait Wait Don't Poke Me! (From July)
When TV & Movies get diabetes wrong (Beyond Type 1 article)
Also this week, what researchers are learning about OpenAPS – the do it yourself closed loop – from Twitter conversations! Read the study write up here.
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1:25 Stacey Welcome
5:00 Interview with Andrew Chapman
35:00 Movie & TV T1D Mistakes (other shows and movies)
36:30 OpenAPS and Twitter: a new study (and Stacey shares her social media policy)
41:40 Stacey will be in Syracuse middle of October
42:40 Stacey shares field trip stories (Benny is on one this week)
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A difficult but important interview with Nicole Smith Holdt. Her son, Alec, died in 2017 just after he came off his parents' health insurance and realized he couldn't afford his supplies. He began rationing insulin and died less than a month later.
Stacey talks to Nicole about how this could have happened and what her message is to the diabetes community and to lawmakers. Nicole will be at the #Insulin4All rally and protect Sept 30 at Eli Lilly headquarters.
More information:
Insulin4All Protest information
NPR: High Price of Insulin Leads to Lethal Rationing
Snopes: Did Alec Smith Die Because He Couldn't Afford Insulin
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"Open Up Your Bag" is a new children’s picture book about diabetes. The story behind it takes us into a great conversation with the author Mike Lawson. Mike was diagnosed as a young adult (after initially being misdiagnosed as type 2) and he shares stories about finding the diabetes community, getting involved in organizations like TuDiabetes.Org and Diabetes Hands Foundation and what led him to write the book and start Diabetes Doodles
Plus, a new resource for our community is now available in audio form. Listen to a bit of Bright Spots and Landmines, a diabetes guide by DiaTribe's Adam Brown
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! You can get Bright Spots and Landmines by using this link.
Learn more about A Bad Case and listen to our previous interview with Erin Spineto
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2:00 Stacey Welcome - Hurricane Florence update and "A Bad Case" is being released
5:20 Interview with Mike Lawson
36:30 Stacey talks about Big Blue Test (watch here)
38:00 Audio samples from Bright Spots & Land Mines
43:30 Stacey talks about Chia Pudding - it needs a new name!!
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Big news for Abbott, the makers of the FreeStyle Libre. This summer the FDA okayed a shorter warmup and a longer wear for the glucose monitor. Stacey talks to Tim Dunn, Abbott’s Director of Clinical research. They talk about the challenge of longer wear, the practical info you need to know if you use the Libre, and a look down the road as they partner with companies like Bigfoot.
Plus, a protest planned at the end of the month – all about affordable insulin. We’ll explain how you can help even if you can’t be there in person. Information from T1International here.
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1:30 Stacey Welcome
4:30 Interview with Tim Dunn
40:30 #Insulin4All Protest information
43:00 Stacey upcoming events & shares why in-person connection is important. She talks about the first time she and Benny met a little boy who wore an insulin pump and what a difference that made for them.
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Letting go of your college-aged child is a challenge even without type 1 on board! We talk to the College Diabetes Network, a college senior with T1D and her mom about fears, communication and making it work. CDN recently surveyed parents about their fears and we'll share the top ten.
Plus, medical help for your 18+ year old child. Even if they're still on your health insurance plan, you can't assume you'll be able to help in an emergency or access their medical records. Here are a few articles to help:
Consumer Reports - Help your college aged child in an emergency
Grown & Flown - When your college kid has an emergency
And Stacey shares how what she calls on her of worst diabetes parenting moments became one of her best.
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1:33 Stacey welcome, mentions Jewish holiday carb counts from Beyond Type 1 and Project Blue November
3:50 Interview with CDN's Stacey Cunnington, Courtney & Karlyn Gale
55:00 Stacey reads the entire list of Top Ten Fears Shared by Parents of T1D College Students
56:30 Know Better: Medical help for your adult child
59:15 Stacey's not-so-proud parenting moment
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It's been 20 years since Nicole Johnson took the crown, becoming Miss America. That was just five years after she was diagnosed with type 1. At diagnosis, her doctors told her she was too sick to continue college, to pursue her dreams of being a journalist and to have a baby. Nicole shares how she overcame that prediction to go on to finish school, compete and win pageants and to have a child a few years later. We’ll also talk about some controversy among the Miss American organization today.
Other Miss America contestants with type 1 include Sierra Sandison and Caroline Carter (click to listen to our previous interviews with them)
Plus, one small step toward a DIY Omnipod Loop. Learn more about OpenOmni.
Stacey also shares a recent issue with Benny's insulin pump and what they did for a backup plan.
This podcast is not intended as medical advice. Please contact your health care provider with any questions.
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1:50 Stacey Welcome
2:45 Stacey talks about the official launch of Jesse Was Here for those who've lost a loved one to diabetes
4:15 Listen to Nicole win the crown in 1998
6:00 Interview with Nicole Johnson
53:15 Stacey talks about OpenOmni (you can also learn more about NightScout here and OpenAPS here)
56:10 Stacey shares their issue when Benny's insulin pump wouldn't charge
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Tandem's Predictive Low Glucose Suspend is out! Stacey and Benny got the software update on Saturday, August 25, 2018 and this bonus episode includes Stacey's thoughts on how the first few days turned out.
More information on the Basal IQ software here.
Head over to Tandem's portal to sign up to get the update if you already have a Tslim X2 pump and a Dexcom G6
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Instead of a rescue Glucagon shot, how about a nasal spray? A simple spray for emergency low blood sugar is in front of the FDA right now. We speak with Lilly Diabetes Senior Medical Director Dr. Thomas Hardy about the need for this product, what it is and how it works.
In our Know Better segment.. a quick tip about Dexom’s G6 - save your papers!! More in Stacey's Facebook live video here.
And a bit about the Bike Beyond documentary. Stacey says it wasn't what she expected at all. You can buy the DVD here or find out how to host a watch party.
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1:35 Stacey Welcome - thanks to DiabetesMine and Jacobs Media (& Elsie Escobar) for featuring us in recent columns
5:30 Interview with Dr. Thomas Hardy, Medical Director for Lilly Diabetes
28:30 Stacey shares her mistake when she was training again on injectible glucagon
32:00 Dexcom G6 information - keep your paper
35:30 Bike Beyond - Stacey's review of the documentary
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It's time for back to school with T1D. Do you know your child's rights and how to best talk to school staff? We have an in depth conversation with Crystal Woodward, Director of the American Diabetes Association’s Safe at School program.
Crystal talks about daycare, preschool and elementary schools. She knows her stuff - in addition to heading up the ADA's program, Crystal's daughter was diagnosed as an infant and is now an ICU nurse.
Plus, a ready to use glucagon pen goes to the FDA.. what would the first room temperature-stable liquid glucagon mean for us? Find out about Xeris's product and the unique way they filed for approval.
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1:20 Stacey welcome and a little bit about sending Benny to daycare and Kindergarten. Mentions FB Live where we announced being selected as a Top Ten Health Podcast (The Podcast Awards)
4:45 Interview with Crystal Woodard about ADA's Safe at School
52:30 Stacey talks about easy podcast apps to use if you're listening on Facebook or through the website and want other options.
Listen on iPhone http://ow.ly/pgfg30kyYrG
Listen on Android http://ow.ly/CQnf30kyYqn
57:00 Stable Glucagon goes to the FDA
1:02:30 Stacey hits the road! Reach out if you'd like her to come speak to your group.
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Can you pilot a plane when you have diabetes? Our guests this week say absolutely yes! Two private pilots, Douglas Cairns and Thor Dahl, share their stories and explain why they went after a world record recently. They visited the most US states in 24 hours, to show that a T1D diagnosis shouldn’t ground you.
We talk about the current regulations surrounding flying in the United States and other countries and why Douglas and Thor continue to push the limits toward change. Check out Douglas's websites Flying with Diabetes and Pilots with Diabetes.
Plus, a little bit of an editorial this week. Stacey talks about how she posted in her local group about the really widespread use of the word “dread.” She's not a fan - why she wants us to think before we use it again.
Stacey is the MC for the debut of Bike Beyond - The Documentary in Charlotte this Sunday 8/19. We followed them coast to coast last summer. You can hear more about the ride here and more about the plan for the documentary in this episode. Watch the trailer here.
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1:50 Stacey Welcome
5:15 Stacey talks to Douglas and Thor about flying with T1D
38:30 Why "The Dreaded" is driving Stacey bananas - a little bit on language and fear
43:30 Update on Benny's return from sleep-away camp
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One of the problems in carrying low treatments everywhere is actually carrying them. This week, learn about a glucose necklace expected to come to market this fall. Inventor Kris Maynard is a former fire fighter and first-responder who lives with type 1.
Stacey talks to Kris about the product, gets some advice about medical alert bracelets, tattoos and what we can do before we call 911. Kris shares the frightening low blood sugar that prompted this new product.
Plus a little bit from Benny about sending kid with diabetes to non-diabetes sleep-away camp. He and Stacey chat in the car about what he does to make his four weeks away work out.
And we talk about Jesse Was Here. It's a new program from Beyond Type 1 and Jesse's mom, Michelle Page-Alswager. Michelle's blog referenced by Stacey can be found here.
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1:40 Stacey Welcome
4:25 Interview with Glucose Revival Inventor Kris Maynard
17:35 Stacey explains Jesse Was Here
22:20 Stacey & Benny talk about camp (in the car on the way there)
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Diagnosed with type 1 at the age of nine, Mark Andrews dreamed of playing professional football. His dream came true earlier this year when he was drafted by the Baltimore Ravens. They kick off their NFL season this week with the preseason Hall of Fame Game.
Stacey talks to Mark about his diagnosis and how he manages T1D at practices and game days. Mark also shares how a teenager really feels when his parents worry about those highs and lows during sports.
Plus, a South Carolina firefighter gets a big surprise from OneTouch. We'll tell you about Perry Clanton’s Small Victory - he lost 96 pounds after being diagnosed with type 2 diabetes and now he's helping his fellow fire fighters get healthy.
And Stacey is one of the winners of DiabetesMine's Patient Voices Contest! She'll be traveling to their Innovation Summit in November.
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1:20 Stacey Welcome
3:45 Interview with Mark Andrews
36:15 Interview with Bridget Kimmel from LifeScan and Perry Clanton, SC Firefighter
48:00 Stacey explains the DiabetesMine Innovation Summit
51:00 A little bit about Benny from summer camp - "A Letter From the Counselor."
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It's our very first show on the road, taped in front of an audience. Nothing serious. In fact, it was a game show – with trivia questions, limericks and more! Play along at home and see how you stack up against our contestants.
Our panelists are: Rodney Miller, founder of Bolus and Barbells, Christel Aprigliano, founder of DPAC, Christopher Snider, Community Manager with Tidepool and our scorekeeper/announcer is Moira McCarthy author of Raising Teens with Diabetes
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1:15 Stacey Welcome
2:20 Wait Wait Don't Poke Me - taped live at Friends for Life!
46:00 More information about the show - audio issues explained, Stacey explains some of the "inside jokes" during the show, including Scott Johnson of MySugr (he was sitting in the front row and we mentioned him a few times)
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