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Every two years JDRF brings 150 children to Washington DC to tell their stories to members of Congress. This week, you'll hear how Children's Congress works, who attends and what this event means for families who participate, even years later. There's so much going on in this episode, we broke it down by time code below!
We also continue our look at Bike Beyond, an epic cross country adventure from Beyond Type 1. 20 riders with type 1 diabetes traveling from New York to California all summer long.
5:10 Silvi Pold, diagnosed type 1 at age 8 is the social media and activities coordinator for Bike Beyond. Silvi shares why, as someone who loves outdoor adventure, even she thought a team of T1D bikers riding cross country was an "audacious" goal.
21:30 Alisa Norris, Chief Marketing and Communications Office at JDRF and a mother of two T1D sons explains how JDRF Children's Congress got started and what happens during the 3 day event.
36:00 Brec Bassinger is best known for the title role in Nickelodeon's "Bella and the Bulldogs." She's also starred in TV's "The Goldbergs," "School of Rock," and co-stars in the upcoming feature movie "Status Update." Brec is attending JDRF CC as a special guest this year. She talks about what helped her pursue her dream of acting after a T1D diagnosis at age 8. Stacey's son Benny sits in on the interview - he and Brec swap some Nick Jonas stories!
55:30 Lauren Stanford attended JDRF CC at age 11 as a delegate and again two years later as Kid Chair. Lauren shares how much the experience meant to her then and how it's influenced her as she pursued a career in Washington, DC.
We need your help! Diabetes Connections and Stacey are nominated for some podcast awards! Please check them out and vote:
People's Choice Podcast Awards (voting closes 7/31)
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This week, two valuable groups are coming together for a big event this fall. For the first time, The Diabetes UnConference and Diabetes Sisters Weekend for Women will be at the same time in the same place. Stacey talks to Christel Aprigliano from the Unconference and Anna Norton from Diabetes Sisters talk about their groups and why they decided to have a "peanut butter in my chocolate!" moment.
Plus.. checking in with Bike Beyond. This week meet Kevin Moore, diagnosed with type 1 diabetes in 1971.
And we need your help! Diabetes Connections and Stacey are nominated for some podcast awards! Please check them out and vote:
People's Choice Podcast Awards
Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Sign up for our newsletter here
As always, thanks for listening!!
This week we find out all about a new reality TV show called Reversed. It premieres July 18th on Discovery Life Channel featuring people with type 1 and type 2 diabetes. The brainchild is producer & host Charles Mattocks and he’s well aware that the name is raising eyebrows.
Stacey talks to Charles about the show, his opinions about the diabetes community and healthcare providers/pharmaceutical companies. He talks about why that's already rubbed some people the wrong way and shares some of the tough-love methods you'll see on the show.
Plus, week six of our coverage of Bike Beyond! 20 riders, all with type 1, heading from NY to California. This week, you'll hear from Amanda Oberski.. who at first.. wasn’t a fan of the idea of a cross country ride. In fact, she thought it sounded horrible!
And is that diet soda really diet? This article from MySugr gave Stacey the idea to check once and for all. She'll share how it really helped on a recent trip to Disney World.
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As always, thanks for listening!!
This week, Stacey's traveling to the Children with Diabetes Friends for Life Conference. She's giving the closing keynote: "Making Diabetes Connections at Home." In this episode, Stacey go over some of the advice to make your own real life connections.
We also get reports from the road as Bike Beyond rolls on. Hear from 4 cyclists, all with type 1, who share some of the ups and downs as they continue their cross country adventure.
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As always, thanks for listening!!
A bonus episode this week to get the word out about Banting's Ghost. Stephen Richert is a photographer and film maker who was diagnosed with type 1 at age 16. His website and project Living Vertical is a way to document his adventures and share his family's story. Now, Stephen is working on a new project: documenting the insulin access crisis in America.
Named after Sir Frederick Banting, one of the researchers who discovered insulin in 1923 and sold his share of the patent for $1, Banting's Ghost is a way to document the people who are struggling. Stephen is looking for funding - you can learn more and donate here.
The deadline for the first phase of funding is June 30th, which is why we're pushing out this bonus episode. If you’re hearing this episode after June 30th, please check out the links anyway to stay up to date with the project and how you may still be able to help.
Get the App and listen to Diabetes Connections wherever you go!
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As always, thanks for listening!!
This week, Mike Avery shares the story of growing up in a family of in-demand Hollywood stuntmen, his dad, mom and brothers are all well known in the industry. Mike was diagnosed with type 1 at age 8, when he was already working. Find out how he learned to manage diabetes while jumping out of planes, off bridges and under pounds of TV makeup. Of course, Mike also has to manage T1D in every day life and shares which is harder, diabetes or death-defying movie stunts.
Plus, week 4 of our coverage of Bike Beyond. Find out why Ryan Dunn got involved less than two years after being diagnosed. Less than a month after diagnosis in college, Ryan left for China on a long-planned trip to study abroad. Find out how he did it, how to say "diabetes" in Mandarin, and why he became the logistic manager of this cross country trip.
In this episode, Stacey also talks about a visit to diabetes camp from American Ninja Warrior Kyle Cochran and an update on T1D's Marathon Man Ross Baker. Baker is on a mission to run a marathon in every US state (and DC). He just checked off Alaska, leaving only Hawaii to go!
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As always, thanks for listening!!
This week, meet three hard-working people with diabetes who are dedicating themselves to helping others with T1D.
DiaTribe editor & columnist Adam Brown is the author of Bright Spots & Landmines, the diabetes guide "I wish someone had handed me." Adam talks about his diagnosis as a teen, why he decided to write the book and what topics were more difficult for him.
Stacey also checks in with Bike Beyond! This week, Miss American contestant Sierra Sandison shares why she wanted to join the cross-country ride. You can learn more and donate to Bike Beyond here.
Plus, what's Dancing 4 Diabetes? Elizabeth Forrest started this event when she was diagnosed at age 10. Eighteen years later, it's turned into a year-round event that's helping educate and raise awareness.
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As always, thanks for listening!!
Lija Greenseid, her husband Andrew and their son & daughter are recently back to their Minnesota home after almost a year of whirlwind travel. The Greenseids always enjoyed travel and they wanted to show their children, Arija & Adam, more of the world. They picked up and spent 9 months traveling internationally. Since Arija has type 1 diabetes, this took a lot of planning, extra supplies and learning as they went. Lija shares their story.
Also this week, as we follow Bike Beyond all summer long, Stacey talks to Sid Sharma. Sid was diagnosed with type 1 two years ago, at age 27. He's already biked from London to Paris and is excited to travel through America with the team.
Get the app and listen to Diabetes Connections wherever you go!
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As always, thanks for listening!!
Lots of news from Dexcom recently! Stacey talks with retired Chief Technical Officer Jorge Valdes about the Apple Watch announcement and much more. (This interview took place just before the FDA approved Dexcom G5 for Android, but that news is covered in the episode).
Dexcom/Android info & compatible devices
Stacey also talks about the news that Beyond Type 1 is taking over Diabetes Hands Foundation's TuDiabetes.org and EsTuDiabetes.org
Stacey shares her personal connection to DHF and mentions this Big Blue Test video that she and her son made a few years ago.
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.
Get the app and listen to Diabetes Connections wherever you go!
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Sign up for our newsletter here
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!
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As always, thanks for listening!!
Jason Gensler has the unique experience of being one of the longest users of one of the newest insulin pumps. He started in a pivotal trial of the Medtronic 670G two years ago and has been allowed to keep using it ever since. Jason shares his misgivings about going back to Medtronic; he had a bad experience with a previous pump and sensor. He also talks about why he feels this system is revolutionary and has given him a new way of looking at managing T1D.
This interview is the first we're sharing that was not conducted by Stacey. Jason is interviewed by Weston Nordren, Vice President of the Nightscout Foundation and Community Outreach for the Foundation. It was originally presented as a video (you can watch here)
Note: Jason Gensler does NOT work for Medtronic and is not compensated by them. He did not pay for the pump/sensor system as he received it as part of a clinical trial.
This week, he’s traveled the world, despite type 1, and now Jeremy Larsen is back in the US, traveling to the US Parks and Monuments. Saying "You always find a way," he wants to inspire us to get out and have fun without fear as we travel with diabetes. Jeremy shares why he's back home in the US to travel the parks, after living and traveling abroad for many years. He also explains why he's made his trip a fund raiser for JDRF.
As of this episode air date, Jeremy will be about six weeks into his trip. We caught up with him near the beginning.
Stacey also talks about the new iPhone & Android apps available for Diabetes Connections. Now it's easier than ever to listen to the podcast and share it with friends and family touched by type 1 diabetes.
This week, diabetes educator Heather Lage has a daughter with type 1 and a son who's tested positive through the screening service TrialNet. TrialNet offers a screening test that can detect markers for T1D called autoantibodies up to 10 years before diagnosis. What’s it like to know your child will get type 1 diabetes? What does her son think about it? Heather Lage shares her family’s story.
TrialNet's ultimate goal is to learn enough about diabetes to prevent it. Many people who test positive are given the chance to enroll in clinical trials.
Also this week, a look at the 8th annual Diabetes Blog Week. Stacey talks with Karen Graffeo who started this event and has been amazed at the growth.
Plus, Stacey announces her partnership with Bike Beyond, a cross-country bike event from the people at Beyond Type 1. Stay tuned or more information and on the road reports from these incredible bikers, all of whom have T1D.
This week, Ed Damiano talks about his Bionic Pancreas project. Using a pump called the iLet and a Dexcom CGM, the only information the Bionic Pancreas needs is the user's body weight. It adapts to you, no need to figure out insulin to carb ratios or correction factors. The iLet will eventually come to market using both insulin and glucagon, but the first version will be insulin-only.
Stacey & Ed talk about the long journey to get to this point, why he had to start a brand new kind of company (Beta Bionics) to help bring the iLet to market and just when he expects it to be available.
Stacey also shares some of what she learned at the recent HealthEVoices Conference and talks about the milestone of this episode: It's the 100th regularly scheduled show for Diabetes Connections!
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...
Roddy Riddle recently completed one of the most brutal & extreme races in the world. The 6633 Arctic Ultra is a 350 solo foot race through brutal cold, wind and isolation. Dozens enter and only a few finish ever year. Roddy is the first and only person with type 1 diabetes to enter the race so far, and the first T1D to finish it. He had to withdraw from the race in 2016. He shares why he was so motivated to finish and what he learned from last time around that helped him not only make it all the way, but come in second.
In our Community Connection this week, we check back in with the Elbow Bump Kid, Logan Merwin. He's raising money for several diabetes causes, including CWD Friends for Life Conference. His big news? He's got a sponsor! We'll talk about how a race truck team got involved.
Anthony Hightower has used Afrezza for the past two years. He credits it (along with a Toujeo, a newer basal insuin) with completely changing his T1D management. In addition to excellent numbers, Anthony shares what else Afrezza has to offer. He explains, he liked it so much, he went to work for Mannkind, the company that makes Afrezza. He and Stacey also talk about the challenges Anthony faced since his diagnosis as a teenager. He admits he spent 20 years trying to avoid thinking about diabetes and credits the online community & the Diabetes Unconference with saving his life.
Stacey also shares what those little "clips" are that come with some pump insets. Her family learned the hard way at the beach a while back! She shares how her husband McGyver'd a solution when they'd left the clips at home.
And, find out how to contribute to our 100th episode coming up soon!
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.
This week's guest is on a mission. Ross Baker wants to run a marathon in every state in the US as well as DC and he is just two states away from meeting that incredible goal. He plans to conquer Alaska & Hawaii later this year. Diagnosed with type 1 at age 19, he was at first told not to run at all, that it would be dangerous for someone with diabetes! He didn’t listen and after running a few races, he felt called to try for something big. This is a story that involves determination, faith and some Bojangles sweet tea.
Stacey also talks about "real people sick" and adjusting basal rates to deal with illness (and mistakes she's made in the past).
Plus, an update on Jack's insulin allergy.
This week, a new campaign to stop a dangerous problem: DKA before a diabetes diagnosis. Beyond Type 1 wants to educate about the signs and symptoms of type 1 diabetes in a new campaign involving pediatricians. Stacey talks to Tom Scher about the group's new multi-state campaign, how doctors are responding to it and what DKA actually is.
Stacey also brings us up to date on how people with type 1 diabetes fared in the brutal Iditarod and 6633 Arctic Ultra races.
Plus, if you're a mom with type 1, Glu needs your help. Hear about a survey for women with T1D who've given birth.
Tom Brobson is JDRF's National Director of Research Investment Opportunities. He was diagnosed with type 1 as an adult and has been involved personally in many artificial pancreas trials, the first of which had him hooked up to a computer in the hospital and not allowed to get up or go anywhere without a healthcare professional by his side. Of course, since then, the trials have included trials with equipment as small as a pump, CGM & smart phone.
Stacey recorded Tom as he gave a presentation at a local JDRF walk kickoff event. He talks about stem cell research, the artificial pancreas project and other advances in diabetes technology. He also talks about approvals and access.
In this episode, Stacey also talks about coughing for pain relief during shots and insertions. Really! We also share the adventures of people with T1D in the Arctic and in Alaska as this episode is released.
Ryan Reed was diagnosed with type 1 diabetes six years ago and was told he'd never race again. At the time, he was moving from California to North Carolina to try to get onto the NASCAR circuit. Instead of giving up, Ryan found a new doctor and got back in the driver's seat. Now a driver on NASCAR's Xfinity circuit, Ryan won at Daytona in February, the same track where he got his first Xfinity win in 2015. Stacey talks to him for this bonus episode at Roush Fenway headquarters in Concord, NC.
Hear more of Ryan's story in this interview from 2016
This week, a conversation about a medical mystery and a family's search for answers. Nine-year-old Jack Smith was diagnosed with type 1 as a toddler, but in the last year he's become allergic to insulin. His mother, Jaclyn, shares their story with Stacey.
About 2% of people with type 1 diabetes have an insulin allergy, but it’s almost always tied to a type of insulin. They are able to switch and can continue dosing without issues. Jack has reacted to every available type of insulin & all methods of injection or infusion.
Note: This interview was taped 2/28/2017, just before Jack was to go back to Duke for a new treatment. As it airs (3/7/17) the first IVIG treatment Jaclyn mentions resulted in some serious side effects, sending Jack to a local hospital. He's recovered and plans are in place to try to prevent those symptoms at the next infusion.
You can follow Jack's story here (Facebook page).
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.