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JDRF's Government Day(s).

Last week, I had the honor and the pleasure of attending the JDRF's Government Day(s) event down in Washington, DC, in the company of some of my favorite diabetes online community members.  Described by the JDRF as "part training session, part research update, part networking opportunity, and part celebration of our Advocacy Program," my experience at Government Day was pretty incredible.

Part of my role as a participant in the Government Day events was to take part in the JDRF Blogger Roundtable discussion, which split the nine invited members of the online community into two groups.  My group ended up as part of the UStream live telecast (which, of course, meant I was paranoid about potentially cursing during the broadcast, but I was able to hold my tongue), the video of which can be found here:

Video streaming by Ustream

But the most important part of my experience at Government Day was visiting the offices of the RI Senators and Congressmen, talking about real lives with diabetes, and how their signature could help move the artificial pancreas project forward expeditiously.  My father was in the political arena here in Rhode Island for several years when I was growing up, and I've always been both impressed and humbled by the power and influence of political players. 

And it wasn't until I sat in the offices of Senators and Representatives of my wonderful little state that I realized the power and influence of people with diabetes.

Rhode Islanders on Capitol Hill

I made the rounds on Capitol Hill with fellow Rhode Islanders Amy (parent of a son with type 1 diabetes) and Eileen (type 1 diabetes for 42 years), and we shared our stories with RI representatives in efforts to really make them understand diabetes.  Not just on the surface, but how it affects our lives both emotionally and physically.  And how a simple signature from them could help provide guidance documents for the FDA to help move the artificial pancreas project forward.

All we did was share our stories.  (It was like blogging out loud.)  But we could see our words hitting home.  "This kid?"  I showed them a photo of BSparl.  "She's not diabetic, but I am.  And I need to be here for a long, long time so this little bird can have a healthy mom to take care of her.  I'm not tugging on heart strings; I'm just telling the truth."  This was my first time ever talking to someone outside of the community about how diabetes may affect my daughter, and the edges of those emotions were raw.  Listening to Eileen and Lilly share their stories made an impact on me; they hopefully made an impact on people whose support we need, as well.

In the twenty four years since my diagnosis, I have seen a lot of change in the care and management of type 1 diabetes.  Meters are smaller, faster, and less intrusive in my life.  An insulin pump delivers my insulin with precision.  A continuous glucose monitor helps me (and those who love me) to sleep more soundly.  And every day, we move closer to new technology to tide us over until that "real cure" comes along, the one that reawakens my islets and makes diabetes a distant memory. 

Progress in all ways is important, and as an advocate for people living with diabetes, I'm proud to be helping every and any organization who aims to move forward with hope, support, and a better life with this disease.  This is why I blog.  This is why I walk and raise awareness and funding for diabetes. 

This is why our community is so strong, because when you push aside companies and corporate alliances,  personal preferences and affiliations, we are all living with diabetes in one way or another.  And we're all hoping for a better life. 

Keep pushing for progress.  For change.  And for unity within our community.

Disclosure: My travel, lodging, and some meals were provided by the JDRF. My opinions weren't. I came up with those all on my own.

Comments

I don't know why, but the part where you talk about BSparl needing you to be here for a long time has me all choked up Kerri. Thank you for advocating for PWD's. As Joe's mom I cannot even begin to put into words the importance of your work.

Have a great w/e.

I was just in D.C at the beginning of the month visiting senators and house reps as part of the DDNC's pubic policy forum. I think the more patients get the word out about their diseases and make it personal the more likely government officials will actually pay attention. :)

What a wonderful opportunity! I wish I could have gone with the ADA. Maybe another time. Washington needs to know there are faces that go with their decisions.

Reyna's not alone.... I've got misty eyes, too! It was wonderful to meet you, Kerri! It was such a powerful experience. The passion of this community never fails to amaze me! I find I'm always walking that fine line between being ok and getting all choked up when I talk D. I'm fine talking D.... But when I talk about it in relation to my little girl.... Fuggeddaboudit. Great job, Kerri! So glad you were able to attend!

Thanks so much Kerri for being part of Government Day(s) and sharing your thoughts and experience with us! Hearing about this from those of you who went is making me even more excited about taking Charlotte to DC for Children's Congress in June! I agree so completely that by getting out there and sharing our personal stories and putting a face to this disease helps make an impact and hopefully will help push forward our mission!

Great post Kerri.

It was amazing to me how little they really understood about our lives with diabetes. That alone is very scary when, as you say, their simple signature carries so much influence in how things shake out for us over the next decade.

While it is always a pleasure to spend time with you, I also thank you for donating your time to help them understand a little more.

What a post. Your words about how your Diabetes affects you as a mother, and your child brought tears to my eyes.

You have such a way with words!

YOU GO GIRL! I loved this post and love that the DOC made it to center stage (well, you know...center stage for one hour, anyway!)

AWESOME!

Thank you for carrying our voices and concerns to those who can make a difference.

Just plain ol' great post. Thanks!

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