JDRF's Government Day - An Overview

Sunday, March 20, 2011

Last weekend, I participated in JDRF's annual Government Day in Washington DC!

JDRF explains Government Day as "a 4 day event that is part training session, part research update, part networking opportunity, and part celebration of our Advocacy Program".

But however you want to define it, it was a blast!  And I am thrilled to have had the opportunity to attend!

J, Sweetpea, and I flew into DC on Saturday morning.  We've traveled and flown a lot with Sweets, so that part was old hat for us.  I was a little nervous this time about the new airline regulations and flying with an insulin pump and supplies.  But it was a non-event.  Sweets got her usual pat down and on we went!

I had not been to Washington DC since I was small, so I was really looking forward to the trip!  Sweets has been learning a lot about Washington and the Presidents in school - so she was excited, too!  As we were landing, she looked out the window and said, "LOOK!  Mom, I see a house!  It's white!  It's the White House!!!"  (It was not the actual White House....)

We checking into the hotel and found our room (#911 - Hmmmm....) and then headed downstairs to find some food!  And this was practically the last time I saw my family until Tuesday morning!!

Saturday evening was the Awards Dinner!  It was a very nice dinner and I had the pleasure of sitting with the D bloggers!  I was very excited to meet these folks in person, as I've been reading their blogs since Sweets was diagnosed!  I got to meet Allison Blass, Cherise Shockley, Kelly Kunik, Kelly Rawlings, Kerri Sparling, Kim Vlasnik, Mike Hoskins, Scott Johnson, and Scott Strange.  But that is a different story that I will tell another day....!

Sunday morning, we started training!

It was a little hard to concentrate seeing as THIS was the view from the window...





The morning began with introductions....  The sounds innocuous enough, right?  Yeah..... Not so much!  Luckily, I was one of the first people to speak.  We were supposed to tell who we were and who we were there for.  Easy peasy!

I'm Hallie.  I'm from Ohio.  I'm here for my daughter who is five years old and was diagnosed almost two years ago."

Oh... but others went into a little more detail...  And for the next  hour or so, I fought back tears and wiped my eyes and blew my nose. 

There was an older gentleman who said he was there for his son.  His son had done well taking care of his diabetes when he lived at home.  But once he went out on his own, he thought he was invincible.  He moved back in with his parents the last 10 years of his life.  He passed away in his late 30's.

Another person told the story of their second child being diagnosed.  This happened years after the first child was diagnosed.  And when they came home from the hospital, they found this child curled in ball on the darkened stairs, crying.  "She must be so scared!" he said.  "At least I was a baby.  I didn't know.  But she KNOWS what diabetes is like.  She must be terrified."

Listening to all those stories.... it reinforced why we were there.  To do whatever we could to advocate for diabetes research and funding.  To find a CURE for this disease.

We spent the rest of the morning talking about the Artificial Pancreas and our "ask" when we talked with our Congress men and women.

This year we were NOT asking for money!  Thanks to the SDP (Which was renewed last year and will bring $150 million annually to the NIH for type 1 diabetes research.  This is enabling the NIH to continue large scale clinical trials and initiate new trials.), we have money to work with.  What a blessing!

This year, advocates were asking their Congress men and women to sign a letter to FDA Commissioner Hamburg highlighting the need for guidance on the artificial pancreas.  To read more about the artificial pancreas, click HERE.

Here's what I find super exciting about the APP.  The technology is ready.  This science is ready.  We are just waiting on the FDA to give us some guidance in order for outpatient trials to begin.

Yes, folks.  It's ready!  READY!  The inpatient trials have been conducted and have demonstrated remarkable results!  It's time to bring the APP into the "real" world!  (Just had a mental image... "This is the true story... of eight strangers... picked to live in a house...wear an artificial pancreas... and have their lives taped... to find out what happens... when people stop obsessing about diabetes... and start getting real...The Real World.  I'd totally watch that!)

The sign on letter that we were asking our Congressmen and women to sign encourages the FDA to QUICKLY and SERIOUSLY consider "draft guidance" (basically a research framework) submitted by JDRF and other leading clinical experts.  It encourages the FDA to keep the process moving so that these new technologies can be tested and MADE AVAILABLE in the NEAR future.

At one point I heard that the APP could possibly be on the market in 3 1/2 years.  Imagine....  Wow!

Sunday evening, we picked up our packets of materials to give to our Congressmen and women on Capitol Hill!  I had so many I got my own bag!  That was a little daunting...

I also had the pleasure of meeting a few of the gals that I have "met" through Facebook!

Beth McCrary and Chris Dornburg were there as representatives from South Carolina!  I've talked with these ladies over Facebook and was thrilled to meet to meet them in person!  They were every bit as kind and wonderful as I thought they'd be!

Chris and Beth

Gary Hall (Type 1 and Olympic Gold Medalist) and Beth

Sunday evening, we had the pleasure of listening to Jeffrey Brewer speak.  He gave a "State of the Foundation" speech and then the floor was open for people to ask him questions.

I can't even begin to tell you how impressed I was with Mr. Brewer!  

Listening to him speak, I was not only filled with HOPE... but a sense of "WOW.  This guy gets it.  He KNOWS..."

And this is why...

Jeffrey Brewer was on top of the world. For years he had put in 100-hour workweeks as cofounder of two early Internet juggernauts: local guide Citysearch and the online advertising pioneer GoTo.com (later renamed Overture). But by 2001, with more than enough money to live on for the rest of his life, the 32-year-old handed off control of Overture and set out on a yearlong trip to Australia with his wife and two kids. Upon their return to the States, though, they noticed something odd. Seven-year-old Sean was unquenchably thirsty and urinating far more often than usual. On September 19, 2002, they took him to the pediatrician. The doctor gave him a urine test and announced without hesitation, “Your son has type 1 diabetes.”    -taken from an article in Wired.  Click here to read on...
Mr. Brewer was very open and answered all questions without hesitation.  As most know, there has been some controversy about the new direction of JDRF.  Some people were very upset and felt that JDRF was no longer focused on finding a cure.  I wrote about it here.

Mr. Brewer clearly stated that the JDRF is NOT turning it's back on a cure.  And here is what I found very interesting...

I always thought that the artificial pancreas would be a great new technology... a great step forward... but I didn't ever view it as having anything to do with the cure.  I learned from Mr. Brewer that an artificial pancreas may well be imperative to making a cure possible.  He mentioned several cure therapies that are in the works.  He specifically mentioned an islet cell transplant and stated that glucose is like poison for islet cells.  In order for islet cell transplants to work, people must be able to control their blood glucose.  Enter the artificial pancreas.

So, PLEASE.... don't think that the push for the artificial pancreas means that JDRF is forgetting about ever finding a TRUE cure (and, for the record, Mr. Brewer said that an artificial pancreas did not "feel" like a cure to him).  It's part of the process.  Not only in finding that cure.... but in ensuring that our Type 1 loved ones are alive and healthy enough to benefit when that cure is found.

Chris, Jeffrey Brewer, and Beth

I could have listened to him speak all night!  I left the room feeling energized and so incredibly hopeful!  It was the perfect way to end the day... and to begin the next step of the weekend - going to Capitol Hill and meeting with our Congressmen and women!

By this time, it was after 9pm.  My day had begun at 8am.  I was exhausted.  But I was going over my talking points for the next days meetings.  As I sat in bed, reading and thinking of what exactly to say about the artificial pancreas, I couldn't help but think....

JDRF began talking to the FDA about the APP in 2006.  That was the year that Sweetpea was born.  Little did I know that five short  years later I would be in Washington DC, getting ready to talk to Congress and advocate for diabetes research and funding... advocate for that little baby girl....

And I couldn't help but feel so extremely grateful to JDRF and those who walked this path before me.... for all they did to get us to this point... back when I didn't even know what Type 1 diabetes was...


Stay Tuned.... tomorrow I write about the DOC and the Blogger's Roundtable!

A big THANK YOU to Beth for letting me use her pictures!!

**Disclaimer....  I am an Action Team Chair (basically I'm in charge of Government Relations/Grassroots Advocacy) for our local JDRF chapter.  JDRF paid my air travel, hotel, and some meals during Government Day.  J and Sweetpea paid their own way.  I just don't like to be away from my girl... or her Daddy... so I begged them to come!  JDRF did not ask me to blog about this event!  Everything I write is what I personally think.  I'm just telling it like it is... at least to me!**
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15 comments:

  1. I've said it before, but I'll say it again: I'm SO proud of you! And SO grateful for your passion, dedication, time and hard work!

    This was such an uplifting post. I think I'm feeling how you must've felt after your evening with Jeffry Brewer!

    Now I can't wait to read about the blogger's roundtable!

    The Real World bit made me laugh. :)

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  2. Hallie, I've said it before, but THANK YOU! Thank you for advocating for all of us living with and/or caring for someone with type 1 diabetes. I am so grateful that you shared (through Twitter) while you were in DC, and continue to tell the story here. It is like we were there with you, and I too feel energized. Looking forward to reading more tomorrow!

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  3. It was great meeting you and the family, and of course Sweetpea, Hallie. You're right: I'm glad we were sitting so close and were up early in the intros, as it became much more difficult as they went on to keep a dry face. Learned so much and had such an incredible time, and it's passion like you have that makes this such a great effort. Thank you for doing what you do. Can't wait to hear your take on the upstairs blogger roundtable session that ended up being webcast... Watched it and thought that group did a great job!

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  4. Thanks for sharing about our trip to DC to be advocates for all people living with Type 1 Diabetes. I truly believe that our greatest hope for a cure lies in the research being funded by JDRF. None of us chose T1 for our precious children, it chose them. And I will choose to be grateful for the many blessings that we have received through this journey. You are one of those blessings! Keep raising awareness through education.

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  5. What an amazing experience! I'm so proud of you for representing and tirelessly advocating for all our children and the adult t1's that we love!

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  6. Girl. You make us mommas proud! Thank you SO Much for advocating for OUR children too! : ) We all lose hope now and then (a cure can seem sooo far away!), I'm so happy that you heard great things, you give ME hope again! : )
    Glad you enjoyed your time, and I can't wait to hear more! : ) Bless you!

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  7. Sounds like an amazing experience! Thank you SO much for representing the T1 community in DC! Can't wait to hear more about it in your upcoming posts too!

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  8. This sounds fascinating, looking forward to the rest of the 'adventure'!

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  9. Hallie, thank you. Thank you for advocating. Thank you for keeping us in the loop with your tweets. Thank you for writing it up on your blog. I appreciate being "in the know" through following you.

    What a fabulous experience. You are one in a million friend.

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  10. Thank you. I cried the whole way though this . . . it took forever to read. Thank you for taking the time, for advocating, for taking the time to blog. I have seen Mr. Brewer on a television interview and was equally impressed. So VERY wonderful what you shared. Just simply, thank you!

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  11. Great post! I was there, saw your little girl (and thought - super cute!), but I didn't make the connection until now. So glad JDRF provides us with a channel for shaking hands with legislators, and hope to meet you guys next year!

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  12. Thank you for taking time out of your busy life to advocate for us all. And thank you for sharing your experiences this week. Loved seeing the pic of Gary Hall (a hero). I think your explanation of the AP is particularly helpful. I had not thought of the aspect of the AP helping maintain BGs to extend the time between islet transplants; just assumed islet transplants would automatically have to be redone every three years. And there will not be enough islets to go around to do this (unless we use encapsulated porcine islets). Of course the AP is just one step on a journey to a cure... I never doubted JDRF's commitment to a real cure. But we must be realistic. Barring some unforeseen miracle, a real cure may be years away. I appreciate any advance in technology to help manage the daily life of living with Type 1. I can't imagine our girl getting up two or three times a night to test blood sugars and still functioning in the real world. Main thing is to keep everyone safe until a cure is found.

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  13. simply amazing can't wait for day 2 :)

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  14. That's just wonderful. Thanks for taking us on this trip with you, Hallie. It's the next best thing to going through it all ourselves.

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  15. I would have to agree with everyone who posted above me. Thank you so much for all the work you do for all of us with children dealing with Type 1. I love your blog. I love hearing about the new technologies and how close we are getting. My doctor says 10 years, (every year I think). My little girl even with as much work as we put in to monitor her #'s is already showing some signs of collagen build-up so to think there's a newer technology coming that could possibly even reverse these effects gives me hope. THANK YOU!!

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