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It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

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!

  • Sara says:

    I deleted my comment a few times because it was too political…

    I am just wondering when funding for the SDP will be equivalent to the number of people affected by it when compared to other diseases which have millions and millions more funding and far fewer people affected by the disease. It’s so frustrating!

    I am very thankful for advocates like Sugar though who work so hard to get us what we need!

    July 21, 2013 at 6:17 am
  • Alexis Nicole says:

    Great post for those unsure how to get involved with Promise Campaign!

    Thank you for all you do!

    July 22, 2013 at 6:21 pm
  • Kristin says:

    You go!!! And what a year for Sugar. 🙂
    What a nerve-wracking year to get the SDP renewed. Will need everyone’s help to make sure it doesn’t fall prey to Congressional dysfunction.
    Thanks for posting – great to experience vicariously!

    July 25, 2013 at 7:13 pm

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