Thoughts From JDRF OneNationSummit NYC

New York, NY - I wake up out of bed and try to speak. Yet, nothing comes out. Losing your voice is always a sign of an excellent weekend.

The JDRF OneNationSummit feels like Disney World for the diabetic community. The energy that fills the air comes from conversations between people that actually understand each other. Why does this only last one day?

 Take the necessary epic selfie after a panel discussion on emotions and T1D. Look at all those smiling faces.

Take the necessary epic selfie after a panel discussion on emotions and T1D. Look at all those smiling faces.

I only made it for the afternoon session so below is an update on the closed loop system (cannot wait), some overall thoughts from people who came, and then some conversations about emotions and T1D. Let's dive in.

1. An Update on the Medtronic Closed Loop System

A closed loop system, also known as the artificial pancreas, is when the pump and continuous glucose monitor work in tandem to automatically manage blood sugar levels. This requires a smart system that uses an algorithm to adjust basal and bolus rates in real time.

Currently, the Medtronic 670G offers a hybrid system and has been approved recently by the FDA (read press release by JDRF). The hybrid part means that the user has to enter an estimated carbohydrate count when bolusing at meal-time.

 The Medtronic 670G display the closed loop symbol on the main screen

The Medtronic 670G display the closed loop symbol on the main screen

What I learned at the talk is that you can get kicked out of the "closed loop." Situations that can cause this is if you do not calibrate the CGM after 12 hours or if there is an gap between a meter reading and CGM reading.

The system tends to be more conservative setting target blood sugars at 120 mg/dl instead of a level like 100 mg/dl. 

"I came away from the weekend totally inspired by the T1D community! Everyone I spoke to is building something beautiful to serve the community whether it be with their company, research or social media." Cassady from BeyondType1 Bike Team

The size of the meter is the same as other brands, like Animas. It takes two days to learn a user's patterns before entering the closed loop system. The pump displays a closed triangle shape on the screen when in closed loop, while a graph and brackets appear when out of the loop.

Removing the burden of T1D

The speaker, who has been on the hybrid system for over one year, discussed what the pump taught her about T1D.

A major perk is the quality of sleep she now gets. To paraphrase, "I used to be woken up by lows, or high alerts, and treat them automatically. Now, I get to sleep through the entire night and wake up with blood sugars in range."

Her fiancé says she is now less moody. She quickly brushes off that comment saying she was never like that in the first place ;)

She also jokes how alerted her that she did not order the monthly deliver of gummy bears. The hybrid system successfully keeps away low blood sugars that she needed fewer snacks around the house.

"And hey, I also lost a few pounds since going on the system," she comments about avoiding empty carbs that once came with frequent lows.

Concerns with the Medtronic CGM and Closed Loop

An audience member asks about the CGM accuracy of the Medtronic system. Many members of our community can relate to this point.

An advantage the speaker has is that she is using Medtronic's next generation of sensor not available to the market yet. This is a sign that the CGM technology is continuing to advance forward.

Also, companies like Dexcom and Omnipod are also working on closed loop system. This should leave diabetics with options to choose the best hybrid system:

"I do not care what brand or equipment I use. All I need is to be on the closed loop."

2. The Psychology and Emotions Behind T1D

JDRF was gracious enough to invite me to join a panel with Dr. Gorfinkle, consulting psychologist for the Naomi Berrie Diabetes Center, and Chris Angell, founder of GlucoLift.

 New friends in the front row, old friends in the back ( the Meetup group )

New friends in the front row, old friends in the back (the Meetup group)

How to surround yourself with a community

Here is a bit about my journey to find T1D friends...

I was diagnosed at the age of 16 during sophomore year of high school. Our community does a great job to help absorb that initial shock. We have nurses at the hospital to teach you about this new life, we get introduced to our endocrinologist, and then the first year has so many news things that it keeps you busy.

But what happens three years into this disease? or nine years? or maybe eighty years like my grandfather (who had T1D)?

Five Ways to Find Other Diabetics

  2. CollegeDiabetesNetwork
  3. BeyondType1
  4. JDRF Mentorship Program
  5. Google "Diabetes Groups in [location]"

In college, I had these moments where all the small pricks of the needles or insertions from the pump eventually got to be too much. This usually happened after ripping a set out from a door knob or hitting that really painful nerve that brings a river of blood with it.

And I had friends who saw me break down. They were not expecting this guy who is always smiling to suddenly crack and say it is too much. Cause let's be honest, this disease is a lot for anyone to handle.

That is when I realized that I need diabetic friends.

At Colby College we started the diabetic club called "The Colby Strippers." Still, marketing genius by my mom. I heard through the grapevines that the president of the college asked about this stripper organization. As you probably know, we chose our name based on the test strips that we use each day.

It's an empowering conference where I was surrounded with hundreds of people just like me, living with Type 1 and thriving.
Gretchen, @typeonetypehappy

And any college student can now set up a chapter or join one through the College Diabetes Network.

Then I moved to New York and noticed that I once again had no diabetic friends. A quick search on Meetup connected me to one of the most supportive groups I have in my life right now: "The New York Diabetes Meetup Group."

Half of the faces in that audience at the JDRF conference are from the Meetup group. We get dinners and drinks about once a month in Manhattan or Brooklyn.

BeyondType1, which only started a little over a year ago, has set up an app to connect this community and a pen pal program called, "Snail Mail Club." I try to send a letter about once a month to my pen pal out in New Mexico.

 Gretchen (@typeonetypehappy) inspiring others to create products that solve a problem in their own world.

Gretchen (@typeonetypehappy) inspiring others to create products that solve a problem in their own world.

All of these different groups have given me places to release a little pressure that builds up from living with this disease. I love my mom, dad, sister, and former girlfriends that have been there for me at every twist and turn. However, they can never know what it is like to live with this disease. 

Our community is now more connected than ever in-person and online. These groups of friends can be there to simply have fun and hang out with or answer more serious questions and help through those tough times.

So there I sat in front of an audience at the JDRF Conference getting asked by parents and friends about how to overcome these obstacles in life. In short, we have to roll with the punches and be there for each other.

Here are some other questions from the audience:

1. When people ask "how's your diabetes" I get really pissed off. How do you even answer a question like that? What should I do?

Dr. Gorfinkle explained that it is important to remember where someone else is coming from. They may not know the ins and outs of the disease but they are often concerned and curious about you. You can respond by asking if there is a specific question or interest the person has regarding diabetes.

2. "When is the right time to teach my T1D son to be independent?"

There are camps specifically for diabetic children, like Camp Nejeda out in NJ. These places give children time away from their parents to learn how to manage their disease in a structured, safe environment.

Dr. Gorfinkle recommended speaking out the decisions you are making in your head so your children can begin to learn from that process. As an example, a mother may speak to their child, "I am giving you 3 units of insulin for this snack because there are 30 carbohydrates in it. I know to use 3 units since your insulin ratio is 1 unit for every 10 carbohydrates."

Your endocrinologist is also an excellent resource to help discuss the transition from parent's managing the disease to letting their children begin to do it alone.

3. Learn to master the diabetes elevator pitch

What questions do you experience time after time? Take a moment now to write them down. Think of a few responses you can give to anyone who is curious about type 1 diabetes. 

All Medtronic users get used to this one, "Is that a pager?"

A response can be this simple: "Your pancreas works. Mine does not. So I ware it on my belt."

Thank you to everyone that came out and showed their support. You have all literally taken my voice away. Once it is back, I look forward to traveling around the country to continue speaking and proving that we can do anything.

If you ever need something, please reach out.