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The Patient Voice 2016: Bridging the Diabetes Gaps

Happy Friday, friends!  Today, Marina Tsaplina is borrowing the blog to help spread the word about an event she is hosting in New York City on March 20th.  It’s the debut event for The Betes organization, and the goal is to give rise to discussions about the emotional influence of chronic illness.  Part of the presentation will be a discussion about diabetes-related complications, which is a topic that we remain guarded and careful about, as a community.  I’m excited to see that topic cracked open in such a way, and Marina’s methods of tackling topics with creativity and passion should be a don’t-miss-it experience.

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Hi everyone! Kerri generously gave me a chance to write to you about an upcoming event for the diabetes community — in NYC on Sunday March 20.

Please join us!

Here’s some info:
Event: The Patient Voice 2016: Bridging the Diabetes Gaps
Date: Sunday March 20, 2016
Time: 1:30 – 5:00 p.m.
Location: 417 e. 61st street, Manhattan

Q: But wait– What’s this all about?!
A: This is the launch event of THE BETES Organization.

Q: Why does this matter to me?
A: Good question!

THE BETES work is about the lived experience of living with chronic illness- the mental health, the emotional well being, and the social dynamics. Our programming currently focuses on the type 1 diabetes space (I’ve had type 1 since I was 2 years old, so yes, it’s personal.)

That’s me in the video below.  It’s a short three minutes and should give you a good sense of how people have responded to our work and how it has touched lives.


Whatever your story is, coming to understand and express the rewards and hardships of living with a chronic condition, surrounded by community, is our task.

This act of expression gives validity to our narratives, and strengthens all of our voices, simultaneously helping those who we are surrounded by better understand the patient experience, strengthening communication and building compassion.

What we at THE BETES add to the mix is the transformative power of puppetry (yes, really!)- suddenly, all of this invisible stuff has form and shape, and we can all see it, talk to it, cry and laugh at it. It’s a powerfully unique creative tool.

The event will host a 45 minute section of our creative, participatory programming. One of our programs is on that big, scary topic of diabetes complications … it’s called the Invisible Elephant Project.

This is a sneak preview and world premiere of a major undertaking, where we have collected over 900 responses through a survey, and have led over 20 interviews with individuals. This will be followed by a heated discussion with a leading panel of patients, advocates, and clinicians, and will be followed by an award ceremony for our two honorees. This is in-between a wine reception with a top-notch live jazz trio.

It’s going to be incredible — but it will be even more incredible, with all of you with us. Actually and honestly, it will be completely no fun and meaningless without you.

We have people coming in from all over — so if you’re anywhere on the Northeast, and if you need a reason to come to NYC, this is it.

twitter hashtag: #ThePatientVoice2016
event registration page: http://bit.ly/PatientVoice

2 Comments Post a comment
  1. Dan Fleshler #

    I’m the most cynical person with diabetes in the history of the world. But I’ve seen Marina and the Betes in action and was deeply moved. So if you’re in the NY area, I urge you to go to her event.

    03/5/16; 2:45 pm
  2. Thank you for highlighting the patient voices event. As you may know “the Betes Organization” is very important to me personally and in my opinion our community collectively.

    I referred this excellent item to the TUDiabetes blog page for March 7, 2016.

    03/7/16; 10:25 pm

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