THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Wednesday, July 31, 2013

Day 3 - 2013 JDRF Children's Congress

Checkout.

Breakfast at 7.

Bus to the "The Hill".

Day 3 was jam packed with meetings with our legislators, a photo op with Vice President Biden, a Senate Hearing, and then a flight to Orlando.

I lived in the DC area for quite a long time, but I never actually visited the Senate and House of Representatives buildings. When Sugar and I participate in advocacy work at our state level, it's a short jaunt from one building to the next -- there's just a courtyard in between.

But getting between both sides in DC, required a cab ride! This was quite exciting for Sugar, as she hadn't ever experienced a cab ride before. I'm pretty sure we could have spent the day hailing a cab from one side to the next, and she would have thought it was as exciting as a day at an amusement park. Alas, hailing cabs wasn't what we were there to do, and so it was time to get down to business.

In the order of our meetings...

First up, Senator Flake.
Followed by Congressman Gosar.
And, finally, a meeting with Senator McCain's staffer.


Then we were whisked off through the underground tunnels to meet the rest of our group for a picture with Vice President Biden...

Photo courtesy of Camera 1.
Sugar is in the third row; 3rd kiddo in front of the girl wearing an orange sweater.
The VP is hanging with the suits, wearing a purple tie.
No time for lunch...we were off to a Senate Hearing where we would share in the sentiment of testimonies to Congress...pleading our case as to why continued research funding for Type 1 Diabetes is so important. You can see all the testimonies HERE.

From there, it was off to the airport...and time to transition from #JDRFcc13 to #CWDFFL13!

But not until I tell you all about our adventure with Hallie and Sweets first. Stay tuned!

Further JDRF Children's Congress Reading from CHB:
You've Got Mail -- Finding out Sugar was selected to be a 2013 Delegate.
Media Blitz -- Media coverage leading up to JDRF Children's Congress.
14 Units -- The sinking realization that your child's life-sustaining insulin is in a fridge 3 hours away.
JDRF CC Day 1

JDRF CC Day 2

JDRF CC Day 3


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Saturday, July 27, 2013

The Puzzle Incident

You lay all the pieces out in front of you, and start piecing them together. 

One by one, a picture begins to fall into place. 

Every now and then, you run across a piece that you know is special. You can tell by the colors and the edges that it's going to be a turning point whenever you figure out where it fits. 

Sometimes you try cramming a piece in the wrong place, and need to walk away when you're frustrated that you can't make it fit. Losing a few puzzle pieces will ruin the entire project, but not realizing you've lost them makes it even worse.


Two weeks ago today, our whirlwind trip across country for JDRF Children's Congress and Friends For Life 2013 was coming to an end. It had been the experience of a lifetime, and I was excited to get home so I could dig through the pictures, and tell you guys all about it.

Somewhere between picking Sugar up from the Tween Social, and regrouping with pals at the pool, a table leg broke, and my puzzle slid into pieces on the floor in front of me. I won't go into details here, but you should know that my fallen puzzle experience was incredibly traumatizing. I wanted to sweep all the pieces back into the box and throw the entire thing away, because figuring out how to put everything back together felt too overwhelming.

It's taken a couple weeks to regain my footing. I've recovered much of my puzzle in that time, and realized the crash wasn't as detrimental as I first thought it would be. Instead of shattering into a million pieces, my puzzle fell in chunks. The majority has been pieced back into place, but the table leg is going to need some work. Going forward, I may refer to "The Puzzle Incident" from time to time, and thought I should vaguely mention it to add a little context.

So there you have it: The-Vague-Fallen-Puzzle-Incident-That-I-Do-Not-Feel-Like-Talking-About-And-I-Do-Not-Know-When-Or-If-I-Ever-Will  ...aka...  "The Puzzle Incident".

On the bright side, I think I'm ready to start blogging more about our awesome trip.

This is progress!

PS...Special thanks to my pals Tracy, Kris, and Heidi for dividing and conquering our Rosebuds while Mr. Rose and I enjoyed an amazing overnight date. We went to Scottsdale where we stayed in this super cute retro boutique hotel. We had a fantastic dinner at Fogo de Chao, and then decided to get a couple tattoos. (Betchya didn't know I'm wild like that, eh?!?!) 

Here's some pictures from our super fab night on the town...

Love.
At dinner, the bread basket was GF! (Made with yucca root flour.)

Thought provoking walls around every turn.
As a helicopter mechanic, Mr. Rose can't wear his wedding band to work. Problem solved!

My turn.

Life is a puzzle. Find your missing piece. -- Wendy Rose
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Saturday, July 20, 2013

2013 JDRF Children's Congress - Day 2 (AND YOU!)

Yes.

YOU.

Today is the day that YOU need to answer the call for help. YOU need to advocate with all your heart. YOU need to stand up and be heard.

But I'll get to that in a moment.

Day 2 began with breakfast followed by a Town Hall meeting with celebrities who are living with Type 1 Diabetes.

Photo by Camera1
Pictured Left to Right: Aaron Kowalski, Sam Talbot, Leslie Adkins, Charlie Kimball, Mary Mouser
Back: Brian Kenny
It was inspiring to hear their stories of triumph and success while living with Type 1 Diabetes. It was also validating to hear them talk openly about highs, lows, and the same frustrations we all deal with.

At one point, Mary Mouser was feeling low and needed to test while sitting up there. Coincidentally, Sugar came to find me at the same time...she was 70.

I did what any ordinarily awesome dMom does: I gave her a glucose tab, and then tweeted it:


After the Town Hall meeting and lunch, it was time to get down to business.

And this, my friend, is where YOU come in.

The delegates were divided into 4 groups to begin the blitz training sessions. Basically, we were learning what to expect during our congressional meetings the following day, and how to make the most of the limited time we would have.

Which means...

**WELCOME TO YOUR BLITZ TRAINING SESSION!!!**

You see, $150M (as in ONE HUNDRED FIFTY *MILLION* DOLLARS) of funding designated specifically for Type 1 Diabetes research is at stake, and YOUR voice can make a difference.

That $150M is called the Special Diabetes Program (SDP), and it's the reason for a wide variety of advances in what we now know about the T1D disease process, technology for management, and strategies for prevention. There have been a multitude of consortia and clinical trial networks, including the infamous TEDDY study and TrialNet, that receive funding from the SDP...and, if Congress does not renew the funding by the end of *this year*, ALL of it will come to a complete halt.

{Read more about the SDP.}

Here's a great infographic that talks about the burden of all types of diabetes on the United States. It's worth a few minutes of your time.  You might be surprised to learn that 1 in 3 children born in 2000 are expected to develop some type of diabetes in their lifetime.  ONE IN THREE!!!!  People!!!

WE. MUST. DO. SOMETHING.

But...what??

I'm glad you asked.

SCHEDULE A PROMISE MEETING WITH YOUR CONGRESSIONAL REPRESENTATIVES!

(Anyone can do this, by the way. Parents of children with diabetes, grandparents of children with diabetes, aunts and uncles, cousins, friends, neighbors, teachers...ANYONE who has been touched by someone living with T1D, and who wants to send the message to Congress to renew the SDP, can use their voice to advocate for it.)

What is a Promise Meeting?

You ask such great questions!


Established in 2000, JDRF’s Promise to Remember Me Campaign is all about building these relationships. Each campaign has been more successful than the last. During the 2013 campaign, we encourage people with type 1 diabetes (T1D) and their families to visit their lawmakers while they are at home.
JDRF volunteers and staff are here to help you set up meetings with your lawmakers, so that your story can make a difference in support and funding for programs that advance critical T1D research. Through the 2012 Promise Campaign, an amazing 457 meetings took place! This year, we want to touch them all, by completing 536 meetings—that’s one JDRF Promise meeting for every single Member of Congress! 

Step One - Sign up:

CLICK HERE to join the Promise Campaign.

There ya go. Easy peasy! Now someone will be in touch with you about getting a meeting scheduled with your lawmakers.

Step Two - Share it:

Prepare to share your story.

Think about what you want your lawmakers to know about living with Type 1 Diabetes. It might help to gather a few pictures to help guide the talking points you want to share. JDRF had us make a small scrapbook for Children's Congress, and it was very helpful in keeping the conversation on task to make the most of our time.

Step Three - Sell it:

Review THIS BROCHURE to gain additional insight into why the SDP renewal is so crucial, and gather some facts to share during your meeting.

During our meetings in Washington DC, we tried to focus on a couple key points instead of talking about everything at once:

1) T1D is an autoimmune disease that can affect every organ in the body. In addition to exploring autoimmunity in general, T1D research examines other medical issues such as blindness, kidney disease, heart disease, stroke, and neuropathy. Basically, you get more bang for your buck by supporting T1D funding.

2) The SDP funds $150M research dollars annually, and JDRF funds $110M.  In other words, JDRF nearly matches government funding dollar for dollar. This balance is the direct result of people who are working hard to push T1D research forward through through bake sales, car washes, walks, and other fundraising efforts. A Promise Meeting is more than a meeting between constituents and lawmakers...it is a meeting between partners.

3) In 2012, the annual cost of diabetes to the U.S. economy was $245 BILLION...and that number is expected to TRIPLE in the next 25 years. WE *MUST* finish what we've started in research, or face the consequence of impending doom.

So, there ya go.

Sign up.
Share it.
Sell it.

It's as easy as 1 - 2 - 3, and EVERY voice counts!

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.