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!

The Ordinaries

I’m writing this while sitting in the Orlando Airport.  Our bags are packed, and we’re ready to head home. Home to where reality awaits...laundry, grocery lists, jobs, familiar routines. I can’t help but to feel that I’m returning home a different person. The past two weeks have been a flurry of emotion. Every day seemed to highlight something I didn’t know existed inside my heart. I’ve realized the strength of empowerment and the bruises of heartbreak on the same day – within the same hour – consecutive moments, in fact.

I’d like to say that I could sit down here and pound out a simple recap, but I can’t. I’m still weeding through the intertwined memories in my mind; trying to decide which moments to share, which to hold close, and if such a thing as “in between” actually exists.

Nothing is sacred...yet everything is sacred.

I suppose that, if there is one place to start, it would be here: I am just an ordinary mom.

It’s really important that you understand this truth when you’re visiting me here. Whether perusing old posts or reading new ones, I want you to know that I’m a flawed person who is trying to do the best she can. There is nothing special about our family. We face the same frustrations and challenges as anyone else. I can’t offer you an impressive resume or a fancy book deal to prove to you why reading this blog is worth a shred of your time or hard earned money.  We’re just ordinary, and that has to be “good enough”.

I mention this because I’ll be posting about our experiences at JDRF Children’s Congress 2013 in Washington DC, and the CWD Friends for Life Conference in Orlando. There are pictures with celebrities, “AHA Moments”, and brutal truths to be had. I’m going to ask you to step out of your comfort zone to do something that you may never have thought you were capable of. I’m going to open my vulnerable heart, and tell you about my fears.

When you see those snazzy pictures, and hear about our snazzy experiences, the last thing I want you to think is “Not me.”

YES YOU.

Remember, I’m ordinary. Just like you. Your child CAN apply to attend Children’s Congress just like we did (FOUR times, by the way). You CAN make the FFL conference a personal goal.

But more than that: you CAN make a difference right where you are. You CAN bloom where you’re planted. YOU CAN CHANGE YOUR WORLD by simply sharing your story, and just being YOU. Step out of that corner, my friend. Come on out of your shell. Jump in feet first, throw your heart into it, and shine on!!!

{Cue applause, standing ovation, and climatic music.}

Let’s hear it for The Ordinaries!!! The run-of-the-mill Plain Janes and Average Joes. The ones who keep things in balance for our families. The ones who make managing our children's diabetes look easy, while counting carbs in a complicated meal that we poured our heart into preparing. The ones who know who needs to be where when at what time while keeping a running tally in our mind about everyone else. 

Stand up and be proud, my ordinary peeps, because we're a force to be reckoned with!

My Turn With The Worms - Embryonic Stem Cell Research

Last week the blog circuit of D Mamas that I keep up with touched on Embryonic Stem Cell Research (ESCR).  When you're raising a child with diabetes, this is a subject that is hard to ignore....because, the truth is, there are labs using this research to advance a cure and organizations close to our hearts who are helping to fund it.

You can peruse Heather's post HERE.  And Jen's post HERE.


I realize this is touchy.  


But who am I to avoid "touchy"????  I like to dive into "touchy" subject matters!!!!  

Some people are morally opposed.  Others are strong advocates.

As a Christian/D Mama/T1D Advocate/Blogger, where do I stand?

To be honest, this isn't the first time I've been posed this question.  From time to time over the past 2 years, I have received a few private e-mails from fellow D Mamas asking me to reconcile my endorsement of the Juvenile Diabetes Research Foundation and my position as a Christian who supports an organization that provides funding for ESCR.
 
Before I get to the nitty gritty of my post, there's a few things I'd like to explain.

1)     The JDRF is an advocacy organization that supports a mission very close to my heart.  Without the efforts of JDRF, children under the age of 8 probably would not have access to insulin pumps.  (Sugar began pumping when she was THREE!!!).  Chances are REALLY good that NO ONE would have access to a Continuous Glucose Monitor (CGM) covered by insurance.  The Special Diabetes Program funding would probably have already been chopped off the block, and the Artificial Pancreas Project would never become a reality.

2)     I have never knowingly donated money raised by our family for JDRF to programs that support ESCR.  As a donor to this organization, I/you/we have the ability to earmark where the money goes....and where it doesn't. 

3)     I think everyone has a right to their own opinion.  If you're morally opposed, I believe you reserve the right to your position.  If you are an advocate, I believe the same.  At the same time, however, I do not believe that this, or any other hot topic, should create a divide.  At the end of the day, we are all united.  We want a cure for Type 1 Diabetes.  I believe that we can disagree and still love each other unconditionally.

4)     In the past 6-8 months or so, I have learned that I do not have to be chained by this disease.  Yes, it remains overwhelming.  Yes, I have moments of despair when it feels like I'm not being the pancreas Sugar needs me to be.  Yes, I oscillate between ups and downs emotionally, much like the rollercoaster reality of blood sugars.  But my heart knows it has already been rescued.  As a follower of Jesus Christ, I take comfort knowing that He can handle the things I cannot.  I can let it go. I can lay all of it at the cross and proceed with confidence.

5)     I also believe that each of us may have a different definition of what a cure is.

For the record, my definition of a cure for Type 1 Diabetes looks like this:

No more finger pricks.  No more carb counting.  No more brain boggling over insulin.  No more highs.  No more lows.  No more "pancreatic thinking".  Sugar will be able to eat/drink something --> there's insulin automatically available to convert glucose into energy --> she moves on with life, never giving her pancreas a second thought.

During this process, none of her other organs are harmed.  She doesn't develop another battle (such as cancer or some other horrible, terrible outcome) to fight.  She does not have to take medications with harmful/uncomfortable side effects in order to maintain her quality of life.  Sugar simply lives.  Healthy, happy, and carefree with insulin/glucagon production to regulate her blood glucose automatically in order to prevent the harmful consequences of uncontrolled blood sugars.

My friends, my concern over a cure -- regardless of which research results in such -- goes far deeper than the lab it is created in.

I'm concerned about the complications unknown.  I'm concerned about the long term effects of medications.  I'm concerned about what the effects are if the autoimmune response is triggered for a second time, causing a relapse of Type 1 Diabetes to occur. 

I'm concerned about rushing out to sign Sugar up for her cure without a hefty amount of long term evidence to support that, indeed, her quality of life will be enhanced instead of potentially making it harder.  As I mentioned in Jen's comments, I have a hard time believing that, one day, this veil of uncertainty will be lifted and the grass will automatically be greener on the other side.

I mean the grass is ALWAYS greener, right?

Not.


It is my position that God is in control.

Heather quoted me in her post...

"In all things, I must constantly remind myself that I am an ambassador for Christ. Christ cared less about authority and more about people.  The hurting, broken, fallible people.  I care about these families and I trust that God is in control.  In the end, it doesn't matter how much money the JDRF raises...a cure will only come in God's timing, using God's authority.  It all belongs to him anyway."


Matthew 19:26  "With man this is impossible, but with God all things are possible."

This is the Bible verse our family walk team uses to inspire our journey in support of the JDRF.

I believe the Bible to be true, and I strive to live by it's teachings.  I believe that, if the Word of God says that the impossible is only made possible with God, then that's all there is to it. 

I have prayed for a cure.  MANY mothers have.  Many fathers.  And other loved ones.  And strangers too.  If a cure is revealed, I believe it will only have been made possible with God's provision.

What if that cure arises from ESCR?

Once there is a substantial amount of evidence to support that the long term risks and complications would not make Sugar's life harder.....

Well....

I believe that God answers prayer.  And, sometimes, answers to prayers are revealed in ways you might never expect.  I do NOT believe a healthy, lifelong cure is possible without His hand.  If Sugar's cure is found, I believe it will only be possible because He provided the knowledge, wisdom, and ability to make it happen.

Until then, I will continue to advocate for improved technology.  Improved quality of life.  Improved insulins.  Improved health care coverage.  Improved access to supplies.  Improved support networks.  Improved education.  Improved legislation.  Improved everything as it relates to Type 1 Diabetes.

I will continue to support the JDRF, because they support all of these efforts.

God is in control of both the journey and the cure.

I am in control of how I respond.