JDRFcc13: Downtown DC with Hallie

We had a few free hours on Day 2 of JDRF Children's Congress 2013 to see some sights. It was a small window of opportunity, so I asked Sugar what she wanted to see the most out of everything.

Her answer: The Lincoln Memorial. (And she wanted to ride the Metro.)

As for me, I wanted to take her to the American History Museum, specifically to see the First Ladies Exhibit

That was all we'd be able to do...one "thing" each.  We were excited when Hallie and Sweets decided to join us, and off we went!

First we walked from the hotel to the American History Museum.

I'm a nurse. He's a helicopter mechanic. We're pursuing the American Dream together.
Corny, I know.

*BONUS* - Coincidentally, one of Mr. Rose's sisters happened to be in town for a conference of her own. She Metro'd over to meet us for a quick hug and hello, before needing to get back to her meetings.

Next up, we found some dinner and then hopped the Metro to Foggy Bottom. We didn't think the Lincoln would be much of a walk...well...at least, not according to the map we had been using...

It was a hike. 

And it was hot.

But we made it.

American History -- CHECK!

Metro -- CHECK!

Lincoln -- CHECK!

Now we had to make it back to the hotel in time to pick up some important information we would need to review before starting Day 3.

We walked.

And we walked.

And we walked.

(Did I mention it was HOT?)

I swear we walked about 154 miles.

For realz.

Okay.

Maybe 156.

But, seriously. It was a really long walk.

All the while, we were testing BGs and Sugar was popping glucose tablets as if her life depended on them. (Ummm...because it did.) I seriously don't even know how many tablets she chomped through in order to survive our sweaty city escapade.

When we made it to the final home stretch, she hit a wall.

She sat down in the middle of the sidewalk, and declared she couldn't go any further. She even took her shoe off. 

I could only imagine how she must have been feeling...every time I checked her she was hovering in the low 100's - literally clinging to that range by the grace of yet another tablet. We were hot. Sweaty. Tired.

But we powered through. She hobbled back to the hotel wearing one shoe, and claimed victory.

We finished strong, my friends!

HI FIVE to Hallie and Sweets!!!!

PS (In case you ever wondered, the U.S. Treasury Building is beautiful. It might or might not resemble the White House after a long, hot, exhausting walk. And you might or might not stop to take pictures of it.  And then you might or might not notice that traffic is whizzing by next to you...and you might remember that cars cannot drive anywhere around the White House. You never know.  You might. Just sayin'.)

PSS (Tonight Hallie and I are chatting it up over at DSMA Live 'Rents! Be sure to stop by!)

 DSMA Live on BlogTalkRadio

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

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:

"Treating my daughter with a glucose tablet while @MaryMMouser treats on stage. #twinlows at #JDRFcc13  — Wendy (@MrsCandyHearts) July 9, 2013"

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!