Thursday, March 24, 2011

The JDRF Government Day Chronicles Continue.....

So when we last left off, I was walking into the cocktail hour with a type 3 dad. As I walked in the ballroom,whom should I meet, but the Fabulous Princess & The Pump herself, Princess SweetPea.

Can I just tell you, how much the Princess ROCKS!

Not only is she cute and styling (that can girl can accessorize like no ones business) but also she’s as smart as a whip!! SHe and I had a great conversation and we giggled, A LOT.

I talked with the Princess & her family for a while and thanks to Hallie (Diabetes Blogger & The Princess's mom), who took this great shot of the Princess & I!

Me, Princess Sweetpea & A Pink Bear~

Then I mingled some more, and before I knew it, it was time for dinner.

I sat with Kerri and Scott. We enjoyed the meal (and the butter) and listened to the keynote speakers.

And that’s when the whole room had the opportunity to hear Jeffrey Brewer, New President & CEO of The JDRF speak.

Ans Jeff’s speech was good - formal, but good nonetheless.

He gets what living with diabetes is like, because his 16-year-old son has diabetes.

He knows about not sleeping through the night, and about worrying 24X7. He knows about living with a teenager with diabetes and the challenges that brings, and that life with a teenager is a whole different diabetes ball game.

He understands the importance that technology plays in dealing with diabetes – and his working very hard for not just a cure, but to make the latest and greatest technology readily available to those of us living with diabetes.

He talked of the CGM study funded by the JDRF – Scottie J goes into great detail about the JDRF CGM funded study, HERE.

I love that Jeffrey realizes that adults with diabetes need a place to go – And I appreciate any person and organization that will give an adult living with type 1 diabetes a place to go. Because whether Diabetes burnout/feelings of loneliness hits you at 7, 18, or 40, when it does, you need the support of people who are dealing with the same diabetes frustrations that you are.

I know there was a blowout re: his diatribe interview, and you all know my thoughts on what happened after it was printed.

I really appreciate the fact that Jeffrey Brewer allowed those of us in the room to get up on the mic and speak our minds.

And the majority of the folks were really positive.

But I really felt like an adult type 1 needed to speak, so I did. When it was my turn, I said something like: Hi, my name is Kelly Kunik, and I used to be a warm fuzzy child with diabetes and now I’m a warm and fuzzy adult with diabetes (for 33 years now) and I blog about living with diabetes. Thanks for welcoming us back to your family table.

I told them my family history and I think I said something along the lines of: We’re all part of the same diabetes family, and some families don’t agree on everything, but because we're family, we have each others back. I believe we need to sit at our family table and give thanks. I know my mother wishes that my sister could be here to blow out the candles on her birthday cake. But she can’t because she died from type 1 diabetes in her early 30’s. Had she had some a diabetes community to support her, I think she'd still be here. So thanks again for welcoming us back, we really appreciate it!

After dinner, Jeff came up to me and thanked me for sharing and said - and I’m paraphrasing here: I really appreciate you telling your story. It really helped explain to others to see how important embracing the adult community is.

The next morning, we had another session re: Strides in research, possible causes of type 1 diabetes, The Special Diabetes Program, the artificial pancreas project - The information presented was mind blowing!

PLEASE call your State Reps & tell then to continue funding for Diabetes!

Then the Bloggers had a sit down with Jeffery Brewer, and nothing was off limits!

In that meeting Jeff really opened up and got personal –And we had a great dialogue.

He stated right off the bat that: Diabetes is persuasive and all consuming and undermining in the quality of life. We spend so much time thinking about it, that sometimes technology tools actually make living with diabetes more difficult. It eats up more of your life.

But he also said that while diabetes technology is overwhelming at times, it’s critical that we have and use those technological tools!

Yep, he understood diabetes burnout from being connected 24x7 AND realized that we needed to work through the burnout and continue to embrace the diabetes technology just the same. Impressive.

He talked about adolescence being the perfect storm for bad diabetes management and he & his family were currently living right in the eye of that storm.

Jeff agreed that every branch of JDRF needs to have "consistent messaging in the organization across the board.” Meaning that if NYC branch of JDRF offers an outreach program for adults living with type 1, so should the North Dakota branch.

Jeff closed by saying:
We need to make sure we have the bond with the people we have supporting and living with the disease - Were not moving away from anyone, were embracing everyone.

And that is a WONDERFUL thing~

Jeffrye Brewer & Some of "The Bloggers"

Next time on the JDRF Government Day Chronicles: A Cupcake dinner & Kelly Hits The Hill Hard!

Disclosure: The JDRF paid for my travel, some of my meals and expenses. I wasn't asked to blog about my experience, nor did they tell me what I could or couldn't say. Like it or not, what I wrote and will continue to write are my thoughts, from my own diabetesalicious brain.


Kim said...

A great summary - and I agree with you. It's a wonderful thing indeed! :)

Meri said...

Amen! We are all in this together! We are family. Love you!

Alexis Nicole said...

First love the pic of you and Sweetpea!!

Amen. Family. A Team. We all need to work together and support one another.


Penny said...

Love the picture of you and SweetPea! She is gorgeous - oh and you are too hon! Sounds like a great conversation with Jeff. I am so proud that you stood up and spoke about adults and JDRF and I am so glad you are at the family table my dear.
All ONE team. Amen to that.

Reyna said...

That pic of you and SweetPea is adorable. You and she are glowing!

And on the "family bit" betcha...we are all in this together. Someday, Joe will be an adult with type 1. I am glad that he will have a place to go to in JDRF.

Thanks for the post.

Michael Hoskins said...

I really can't get my sleep-deprived mind around all the great summaries and recaps, but I know two things for sure: YOU ROCK. and Sweetpea is the MOST AWESOMEIST LITTLE GIRL EVER! This post lit up my face with a smile, and you're so right on about Jeffrey Brewer's talk. You did an awesome job up at the mic, as always! Thanks for doing what you do and being who you are for all of us.

Tracy Portner said...

i especially liked your disclaimer. made me smile with all the iciousness LOL

Hallie said...

Oh, Kelly! Where do I start?!?
I LOVE that pic of you, too! You can just feel the love! She adored you and I'm so glad she was able to meet you!

The speech was so inspiring! I was left with such hope and comfort that this man- who really does get it- is leading us into the future!

I'm so glad you spoke! You had me in tears! But in a good way! We ARE a family. and everyone is important - no matter how old you are or what your connection. We all can learn from each other and we all need one another!

Love you, girl! And LOVE your diabetesaliciousness!!