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JDRF’s Children’s Congress kicks off this week and we’re talking to three really incredible delegates. Meet Jack, Hannah, and Kabir who will all tell their stories to legislators. You'll also hear from Stacey's local advocacy chair to find out what Children’s Congress is all about and how to apply next time around.
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Our Community Connection this week is all about getting diabetes gear to stick in the hot sweaty summer. We’ve got advice from parents of little swimmers and adults who take hot yoga.
Scroll to the bottom to see a list of items/products mentioned during this episode.
In Tell Me Something Good, we’ll talk about a trip of a lifetime as a 16 year old travels to the remote Yukon with a school group.
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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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Show Open/Tease
Stacey Welcome - Find out more about Project 50 in 50
JDRF Children's Congress Greater Western Carolinas Chapter Delegates
Community Connection Getting Gear to Stick:
TMSG:
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This list is full of brand name and generics. I’ve linked to a website when the brand has one. You may also want to try Amazon or ask your medical supply provider. Just as everyone’s skin is different, so is our health insurance. It’s possible that what works for you may actually be covered. Stranger things have happened.
I expect to edit & add to this list in the weeks and months to come. Hope it helps!
Sticky Wipes
These make the skin a bit tacky in order to give the material you put on top a better hold.
Skin Tac wipe or liquid
IV Prep wipe
Mastisol liquid
Stoma Care wipe w/aloe
Hollister skin gel
ReliaMed wipe
Tapes/Patches
Tegaderm film dressing
Opsite Flexifix transparent film
Hypafix dressing tape
RockaDex Dexcom patches
GrifGrips adhesive patch
Waterproof Bandaid
Wraps/Bands
Kinesiology Tape (Includes brand names KT Tape, Rock Tape, Vara Tape)
Vet Wrap
Athletic Sleeves
Rash Guard/Swim shirt (cut to fit)
Misc.
EK Tools Tag Punch Classic (Dexcom-sized hole punch)
Dexcom & Libre Rash (Public Facebook Group)
For 14 years, Kerri Sparling has shared her story on the very popular blog, SixUntilMe. This month, she published her last post. We take a look back with Kerri and go beyond the blog. We also asked her mom, Debbe, to join us! Debbe shares what she thinks of Kerri's accomplishments and influence and we talk about raising a child with type 1 in a time with very different technology and tools.
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In our Community Connection – help for people with diabetes who have insurance but still can't afford all of their supplies. We catch up with Diabetes Will's Way as they celebrate 5 years!
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And Tell Me Something Good – meeting your people for the first time. How diabetes conferences are good for the body and the mind. Listeners share their stories and Stacey talks about a recent TCOYD conference.
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00:00 Show Open - What's going on this week?!
1:46 Stacey Welcome - She shares a great mother's day present: Benny was Rufus at their local JDRF walk and Lea worked a food truck at the walk. Proud mama moment! Some info about the website - it's still under construction - you can listen to shows there but lots of good new stuff is coming!
5:15 Interview with Kerri Sparling and her mom, Debbe
40:00 Catching up with Lisa Oberndorfer, the founder of Diabetes Will's Way - she's Will's mom - as she marks 5 years of helping people with health insurance who still can't afford what they need. Will was diagnosed at 13 and just graduated high school this year. He was the valedictorian of his class! We also hear from Kathy who received a grant for her daughter's Dexcom CGM.
55:15 Tell me something good: Sarah is 26 just recently diagnosed and met her first T1D people at the EPIC conference in Denver. Stacey talks about the TCOYD conference and a specific session with Dr. William Polonsky of the Behavioral Diabetes Institute
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Let's #Talk About Complications. That’s a hashtag created by this week's guest who's taking a topic that most of us would rather avoid, and putting it into the spotlight.
Chris Aldred is better known as the Grumpy Pumper and he wants us to stop being ashamed to talk about possible complications from diabetes and to stop the blame surrounding this dicey issue.
More information on his blog here
Find out more about Spare A Rose
Find out more about Diabetes Podcast Week
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Also this week, your diabetes educator is getting some help when it comes to staying current on technology. Stacey talks to AADE's Chief Technology and Innovations officer about a new resource for educators called DANA.
And, tell me something good: a big step forward for a 5 year old two years into her T1D journey and a big award for a tween.
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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1:40 Stacey welcome, explains that Chris Aldred's son was just diagnosed with type 1 over this past weekend. She explains Diabetes Podcast week and shares a story about Nick Jonas's wedding reception, not far from where she lives.
8:30 Interview with The Grumpy Pumper
39:20 Interview with Crystal Broj
47:00 Tell Me Something Good: Congratulations to 5-year-old Rose who just checked her blood sugar for the first time! And congrats to 12-year-old Logan Merwin for winning the JDRF Spirit Award at Run Disney! Learn more about Logan, the Elbow Bump Kid
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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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
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Click here for iPhone Click here for Android
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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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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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.
Join the Diabetes Connections Facebook Group!
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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
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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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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It's been more than 30 years since the play & then the hugely popular movie Steel Magnolias came out. It still continues to be a focal point for women, pregnancy and diabetes. When Stacey's local theater announced their production, she decided to put together this round-table of moms who have type 1.
You'll hear from: Kerri Sparling, author of Six Until Me & “Balancing Diabetes.” Melissa Lee, Director of Community Relations for Bigfoot Biomedical & Kyrra Richardson, founder & Creative Director of Myabetic
Kerri, Melissa & Kyrra talk about their feelings around Steel Magnolias, their experiences with diabetes during pregnancy and now as they raise their children.
Resources:
JDRF Pregnancy Toolkit
http://www.jdrf.org/wp-content/uploads/2013/02/Outreach_pregnancy_12-14-12.pdf
Diabetes Sisters:
https://diabetessisters.org/blog/qa-ginger-vieira-pregnancy-and-diabetes
https://
https://
Beyond Type 1: Pregnancy Resources
https://beyondtype1.org/pregnancy/
Plus a big award for a diabetes group that made a big difference last year during those devastating hurricanes. Read the article from DiabetesMine
And Stacey clarifies her the circumstances around her receipt of the G6 system earlier this spring.
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1:30 Stacey welcome - taping from the Friends for Life Conference, so apologies about the rough voice this week!
4:30 Dexcom G6 clarification - Stacey received the system and one month supply free earlier this spring. She explains why she initially thoguht (and told listeners) that she was paying for it. She is now paying for all G6 supplies.
7:15 Steel Magnolias Roundtable with Kerri, Melissa & Kyrra
59:20 A big honor for Insulin For Life USA after their work during last year's hurricanes.
1:02:45 Benny's at camp doing cannonballs (please let that Dexcom stay on!)
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You’re hearing a lot right now about Children with Diabetes Friends for Life. The largest family diabetes conference in the world starts this week. But how did it begin? What's it about? You’ll hear from the founder of the whole event.
(This episode contains excerpts from our interview with Laura in 2015. You can listen to that whole episode here)
Plus, questions from the Facebook Group for Stacey. Some diabetes, some personal.
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1:00 Stacey Welcome
4:30 Excerpts from interview with Laura Billetdeaux
19:45 Facebook Group: Ask Me Anything
40:00 Stacey talks about her latest Audible download
Information about Audible - Get your 30 day free trial and free book here
41:50 Next week: Moms who have type 1 talk about Steel Magnolias
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