JDRF Government Day Whirlwind

Picture of Scott with Gary Hall Jr.The first session I went to was called “Government Relations 101”. Sounded perfect to me – as I had no clue what I was getting into. Kim and I sat next to each other and listened to a great, high level, presentation about the JDRF and Government Relations.

At some point during the talk, Gary Hall Jr. was mentioned.  Yeah, 10 time Olympic Medalist Gary Hall Jr.! Everyone looked over to the left, and there he was – sitting but a row in front and a couple of seats over from us!

After the session was over, Kim and I went to chat with him.  He was so down to earth, and there advocating just like the rest of us.  He wasn’t big bad superstar Gary – he was just Gary, a guy with type 1 diabetes doing whatever he could to help make a difference.

Image of Scott's Dexcom CGM with crazy highs, and a sudden dropBy the time that session was over, it was around 5:00 PM on day 1.  I had only slept about tw0 or three hours before leaving Minneapolis, and the short sleep was really starting to mess with my blood sugars.  Even though I had been throwing bunches of insulin at my highs, they just wouldn’t budge.  Until all of a sudden they did–scared the crap out of me–then went back to being high again.

I have a theory about the lack of sleep and my blood sugars running high.  When I don’t get enough sleep, my body is stressed out trying to keep up with my activities – so it’s likely pumping out all kinds of stuff that make me more insulin resistant than normal.  That’s my story, and I’m sticking with it until I learn differently.

The next morning started off way too early, again, but I was quickly drawn into the action.  We were in a huge ballroom lined with tables.  There must have been at least 150 of us in there.  Each and every person took a minute to stand up with a microphone and share their story about why they were there.  It was pretty damn moving.  Lots of laughs, and twice as many tears.

Later that afternoon was the blogger round table discussion.  There were two groups presenting, splitting the audience into two equal-sized groups to make open discussion a bit easier.  I presented with Kelly Kunik, Kim Vlasnik, Kerri Sparling, and Cherise Shockley.  The other group was Scott Strange, Allison Blass, Mike Hoskins, and Kelly Rawlings.

They did a live broadcast of our group on UStream (recording below), allowing many more people to tune in.  With all of the questions, both from the people in attendance and from people watching the broadcast, we could have used the entire afternoon.  It was too bad we couldn’t get to all of them.  I would also love to see a recording of the other group – rumor is that it was recorded and will be online soon.

Lorraine, Jeanne, Scott, Kerri - Type 1 Talk presentationAfter the roundtable session, Kerri and I were asked to help introduce a new tool the JDRF has made available.  Type 1 Talk is a brand new Facebook app that allows you to connect with other people touched by type 1 diabetes who are nearby.  You can use this tool to see if there are any local groups nearby or to organize a get together for coffee with like-minded people.  You’ll hear more about this soon, as I think the JDRF folks are pretty excited about it.

Aside from being introduced as “Steve” (it’s Ok Lorraine – I forgive you, but will not pass up an opportunity to poke fun in a blog post…), it was a pleasure to share the stage with Kerri again.

In the evening we had dinner and listened to a speech by Jeffrey Brewer, President & CEO of JDRF.  I had a front row seat and was excited to get a feel for Mr. Brewer.  In short, I felt his initial presentation was a little too “canned” or scripted.  But I think if he would have slowed his delivery down just a little, it would have been fine.

He was much more relaxed in the Q&A section of the dinner, and that allowed his passion and personality to shine through.   He gets it.  He talked about his feeling that many of us adults have fallen away from the organization because we’re not being shown all of the good work the JDRF is doing en route to a cure.  We hear “cure, cure, cure”, but as we all know, there isn’t one yet.  So we feel as if there’s nothing happening, that it’s the same old messages over and over again, then we move on, sometimes with (in my opinion) hostility towards the JDRF.

Mr. Brewer wants to welcome willing adults with type 1 back into the fold.  He wants to do a better job of including us in things they are doing, and he wants to do a better job of sharing all of the great things the JDRF is doing as it is working towards a cure.

For example, did you know that the JDRF spent $10 Million dollars to fund a study on CGM use?  It was a study that might have been viewed as a common sense thing – of course, CGM use should improve diabetes management, right? But there were no studies done to prove it, so insurance companies were not covering CGM devices as widely as many thought they should.  JDRF stepped up to the plate to fund this study, which provided data which was then used to push for better insurance coverage for CGM devices.  That was $10 Million dollars that nobody else would spend because it seemed like such a no-brainer!  Why fund a study that most would call common sense?  I thank the JDRF for the insurance coverage I have for my CGM sensors.  If they had not funded that study, who knows where we would be with CGM devices and insurance coverage.

Take that example a step further – do you know of any CGM systems that are labeled and approved for use by children? As far as I know, as of today, there are NONE approved for those under the age of 18. How dare we adults feel like the JDRF isn’t doing anything for us?

Later that night, five of us d-bloggers made history.  A live, sweatabetes workout session at 11:00 PM!  It was pretty awesome!  I taught everyone how to do a Turkish-GetUp.  Ginger would have been so proud!  After about 40 minutes of working out, many of our blood-sugars were dropping.  So we made a group decision to head downstairs and have ice-cream, where we met up with the rest of the slackers and made them feel really bad about not working out.

After ice cream, I was coerced into demonstrating a Turkish-GetUp for those that missed the live sweatabetes session.  So I did one.  Using a jar of glucose tabs instead of a weight.  On the floor of the bar.

I know, crazy right?  It’s all Ginger’s fault.

Next post about this? Dinner in D.C. – taking over Chevy’s, with pitchers of diet soooooodaaaaapop (imagine a thick Minnesotan accent…)

Share this on:

Notify of

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Oldest Most Voted
Inline Feedbacks
View all comments

Scott K. Johnson

Patient voice, speaker, writer, advocate, and Senior Community Manager at Blue Circle Health. Living life with diabetes and telling my story. All opinions expressed are my own and do not necessarily represent my employer’s position. Read more…

📬 Want updates?