Tag Archives: Advocacy

After Thoughts: Julie Holt

Julie & Lucas

Julie & Lucas

I don’t think I’ve ever felt more comfortable chatting with a guest than I did with Julie.  I’ve not met her in person, and have only briefly chatted with her on Facebook and Twitter, but it sure felt like we were old and comfortable friends.

There were so many great connections made during this episode.  We heard about Lucas’s diagnosis, and how Julie found the Children With Diabetescommunity almost immediately, which was a huge help.  Interestingly, we learned that Julie had been diagnosed with rheumatoid arthritis (RA) just a year before diabetes entered their lives.  Talk about overwhelming!

One of the cool connections of this episode came when we asked Julie if she was aware of the RA online community, which is a powerhouse in its own right.  She mentioned seeing Cherise retweet something from Kelly Young (@rawarrior), checking it out, and discovering the RA online community, literally just days ago!

Constantly battling to balance the needs of her own high-maintenance chronic condition, and that of her son, Julie works tirelessly to take care of both of them.

Lucas spent his first year with diabetes at school without a school nurse, something that Julie fought long and hard for (and eventually won).  She knows she was very fortunate in winning that battle, as many families struggle without proper nursing availability at school.  (ADA has some resources, Safe at School, to help if you are currently in need of support)

Before I end this post, I’d like to plug Julie & Lucas’s JDRF Walk Team – “Holt’s Heroes“.   If you’re able to support them with a donation, or spread the word about their walk team, they would appreciate it a great deal.

As always, the hour went by way too fast, and was way too fun.  I hope you’ll share some of your time and check it out.

– Stream the showDownload the MP3 (~15MB), grab the podcast via iTunes, or listen below.

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After Thoughts: Jason Turner

Portal vein and Catheter
Jason in Dubai!

Jason Turner in Dubai!

This may have been the most information-packed episode we’ve had yet, and I enjoyed every last minute of it.  Jason was diagnosed with type 1 diabetes in 1983.  He talked about his college years, and even let a little bit of his Canadian slip out when he said that during college, his blood sugars were “all over the ice” (that line totally made me grin).

Experiencing complications at an early age, and feeling very alone and isolated with all of it, his doctor encouraged him to check out some of the research happening right next door.  Jason was living in Edmonton, where the popular “Edmonton Protocol” was discovered (and continues to be refined).  He applied for the study, was accepted, and received his first (of two) infusions of islet cells.

The night of the show happened to fall on Jason’s 7-year transplant anniversary.  I thought that was pretty cool.

We had some great callers (Jeff, Amber, and Julie), two of which were also islet cell transplant recipients and were calling to express their gratitude to Jason for his continued advocacy and sharing of information.

All three, Jason, Amber, and Julie, said they feel that they have a new lease on life, and have never felt healthier.

Jason’s last thoughts on the subject were that he doesn’t feel that islet cell transplants are a true cure, but rather a very effective therapy.  I thought that was very well said, and puts it into a great perspective.

Check out the show for more details – I’m pretty sure you’ll learn a lot about this ever evolving, and very encouraging, therapy.

– Stream the show, grab the podcast via iTunes, or listen below.

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After Thoughts: Kyle Jacques Rose

Kyle J. Rose

Kyle J. Rose

 

This week we got to chat with my friend Kyle Jacques Rose.  He’s lived with type 1 diabetes since his teen years and has always led an active life.  I got to know Kyle when we worked together at Cozmo, and we’ve stayed in touch since then.

Kyle is a super smart guy with a heart that rivals any person I’ve ever met.  It was exciting to hear about some of the projects that he has been working on through Delta Project Management, where he is managing director and principal consultant, and they fit Kyle perfectly.  He has been working hard on advocacy for reimbursement and access abroad.  We spent some time talking about the state of diabetes care in developing countries, and how there is such a contrast between that and what many of us take for granted.

Kyle is passionate about patient engagement and sees social media as a very important aspect of taking that engagement and using it to improve treatment outcomes.  He is naturally curious about so many things, and has an innate ability to see so much value in the information he uncovers.  You’ll see this if you spend even a small bit of time with him because Kyle will ask great questions and actually listen and think about your thoughts on the question.  It’s so refreshing to have such positive, thought provoking, conversation.  Not many people really listen these days.

We heard about Kyle’s experience with a closed loop trial, and his experiences with some related CGM trials.  It was really interesting to hear from someone that has actually been hooked up to some of the early combined systems, and even more interesting to hear how emotional all of it was.

One resource that Kyle mentioned is a site called T1DStars, a site sponsored by Sanofi, that looks to serve young people with diabetes by giving them a ton of resources and information around living well with diabetes while growing up and dealing with school and growing up.

We covered a lot of different topics, and I very much appreciated Kyle’s insights on all of it.

I hope you’ll share some time with us and listen to another great show.

– Stream the showDownload the MP3 (~15MB), grab the podcast via iTunes, or listen below.

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After Thoughts: Steve Richert

Steve climbing up a big rock wall

Steve climbing up a big rock wall

Our last show of 2011 brought a great guest in Steve.  Steve and Stefanie are Living Vertical, climbing to show that diabetes is a stepping stone, not a roadblock.

Through Project 365, a documentary project that is all about advocating for people with diabetes, encouraging an active lifestyle and exposure to climbing, Steve and Stefanie aim to show that diabetes is a stepping stone, not a roadblock.

We heard about Steve’s diagnosis in 1999, a transitional time for him in many ways.  As Steve grew, in age, in diabetes, and in climbing, he started to see a lot of similarities.  He likes how climbing can completely shift perspective, shifting your mindset from traveling on a horizontal plane to moving on a vertical plane.  Many challenges appear that seem impossible (such as learning how to “be” a pancreas), but when you step back, grow in skills and knowledge, the impossible becomes possible.

– Stream the showDownload the MP3 (~15MB), grab the podcast via iTunes, or listen below.

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