JDRF Type 1 Talk

On World Diabetes Day, November 14, 2010, I headed out to the local JDRF chapter office. They were hosting a Type 1 Talk meeting, and I wanted to check it out.  I wasn’t really sure what to expect.  I’m not sure if that is because I’m chronically behind on blog & news reading, or if JDRF didn’t know the best way to promote it and get more people involved.

We had a group of about 12-15 people there, and it was good to meet some new people living around here that live with type 1.  I also enjoyed meeting some of the local JDRF office staff.

There were some technical difficulties during the first 20 minutes of the broadcast, but they got it all figured out in time to catch most of the session.  One thing I did catch in the first couple minutes, which made it all worthwhile, was someone saying “We are here to recognize World Diabetes Day.”

That was a huge statement, and I was really glad to see the JDRF organization at least acknowledging the day.  World Diabetes Day has received very little attention here in the United States, and I am hoping that this is a step in the right direction.  Maybe next year they will help promote it!

Once all of the wrinkles were fixed with the computer, we got to listen to a discussion panel answer questions and share their thoughts on a few topics.  On the panel was Kerri Sparling (Super Advocate and PWD), Aaron Kowalski (JDRF’s Assistant VP for Treatment Therapies), Lorraine
Stiehl (JDRF’s National Chair of Grassroots Advocacy), Dick Insel (JDRF’s Chief Scientific Officer), and Rachel Steinhardt (JDRF’s National Director of Marketing and Communications).

I got a lot from the discussion, but truth be told I would have tuned in just to cheer for Kerri (insert cheesy, proud-brother, ear-to-ear grin here).  She did such a great job of representing for us adults with type 1 diabetes, and the diabetes online community.  I was especially proud when she mentioned the “huge emotional burden of living with diabetes”, something that is in dire need of attention.  Thank you Kerri!

Another point that really stuck with me was Aaron talking about a teenage girl who spent three days in a hospital for one of the artificial pancreas studies.  This young lady said “that was the best vacation I’ve ever had!” and all I could think of is how much that says about life with diabetes when we would gladly choose to be confined to a hospital with a bunch of “stuff” hooked to us, just to not worry about our blood sugars.

Think about that for a minute.

Kerri’s closing statement was perfect:

“Just because we make diabetes look easy, it’s not.  And just because we
make it seem like it’s something we can live with and we can have this
big, full life – which we can, but at the same time, it can be very
challenging.  I think the one thing that I want to leave us with is that
just because we don’t look sick, doesn’t mean we don’t still deserve a
cure.” — Kerri Sparling, 2010

 

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Scott K. Johnson

Patient voice, speaker, writer, advocate. Living life with diabetes and telling my story. Patient Success Manager, USA for mySugr (All opinions expressed are my own and do not necessarily represent the position of my employer).

Diagnosed in April of 1980, I recognize the incredible mental struggle of living with diabetes. Read more…