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The JDRF and the Online Community.

RAISE!  YOUR!  VOICE!  Wherever you see fit.  :)As a kid, I wasn't an advocate for type 1 diabetes.  I was a kid.  I went to diabetes camp (CBC 4 LIFE) but that was the extent of my involvement with any kind of diabetes community.  It wasn't until I was out of college and feeling like I existed on a diabetes island that I began to crave interaction with and understanding from other people with diabetes.  So, at Chris' suggestion, I started a blaaaaaagh and everything just got all sorts of exciting.  Namely, I had finally connected with other people living with diabetes. And it felt gooooood.

Now that there is an established online community for people with diabetes (PWDs, caregivers, and loved ones alike), there are a lot of opportunities for engagement and advocacy.  The DOC isn't limited to adults living with diabetes; there are blogs written by parents of CWD, spouses and significant others of PWD, and even doctors who care for PWD.  And it's not even limited to people who are interacting online - the diabetes community is offline, and on.  And after meeting with the new CEO of the JDRF, Jeffrey Brewer, last week in DC, I realized once again that we're all in this together.  This guy gets it.  His kid has diabetes, making me realize that Jeffrey is just like my mother in that he wants what is best for his child. 

But what cracked me up is how Jeffrey realizes that those of us who are adults with type 1 are a version of what his son may grow up to be.  We're still living with diabetes, we have "real lives," and we aren't perfect.  He and I were talking and the concept of "a perfect diabetic" came up in conversation.  During the course of our exchange, Hasan Shah (the Grassroots Advocacy Manager at the JDRF) came up and asked if I was really carrying a unicorn puppet around with me. 

(How do these rumors start?)

"Yes, I do."  I rummaged around in my purse until I was able to grab Sprinkles by the yarn mane.  "Here.  This is the DOC Advocacy Unicorn: Sprinkles."

Jeffrey was a little taken aback.

"What's that, again?"

"The advocacy unicorn.  Because I have this belief that we make diabetes look a little too easy sometimes, and it's important to remind people that type 1 diabetes isn't always rainbows and unicorns.  And that despite the fact that we oftentimes don't look sick, we still deserve a cure."

(And if there was ever a time I wish I had captured the look on someone's face, it was at this moment.  A mix of "Ah ha" and a total "Are you low?")

"Makes perfect sense," he said.

"I don't always carry puppets around with me." I replied.

But this goes to show that the people who are involved with the JDRF don't just "get it."  They "are it."  And they aren't alone: there are plenty of people who are involved with many different diabetes-related organizations who are pushing for and passionate about progress towards a better life with diabetes and a real-deal cure.  Diabetes advocacy isn't limited to one organization or one mission:  any steps towards a better life benefit us all.  Because you can bet your ... everything that I want to be as healthy as possible for as long as possible.  

This past weekend, I was the Fund a Cure speaker for the Rhode Island JDRF's second annual Hope Ball, and had the honor of speaking to that crowd.  Between the Government Day experience and attending the Hope Ball, I've been reawakened to the impact that the JDRF has on people with diabetes.  And I'm not talking about the Bag of Hope - I mean the real research and government relations that are changing the landscape of our diabetes collective.  Not just for kids, but for the parents taking care of them, and for the adults those children will hopefully become.  

It's a group effort, this diabetes thing, and I think that the JDRF and the online community can work together to effect great change.

Diabetes advocacy isn't limited to one organization or one research ambition.  What organizations do you dedicate your advocacy time and efforts to, and why?  Do you find yourself donating your time to a broad range of diabetes efforts? 

Comments

I dedicate my time and efforts towards (a) organizations looking at treatment, research, and/or community support for both main types of diabetes - we end up with the same complications and we just never know how a cure for one may impact a cure for the other and (b) organizations that directly help low-income individuals with diabetes supplies (iPump, ACT1, etc).

I believe the Faustman lady is the way towards a real cure in our lifetime. Everyone else is great and does a lot of research and stuff but Faustman will be the one who gets us to throw out our insulin vials!!!

What a spectacular post, Kerri. I would've given anything to be in on that discussion with Jeffrey and Hasan, where he met Sprinkles. That is so classic. Thank you for doing what you do, and spreading the word about everything going on in the D-Community.

I have not really gotten into advocacy, because neither ADA nor JDRF have offices in my small city. But I am interested in finding ways to support research both for cures, and for improved living for people with diabetes, and ways to help less well-off people who don't have computers and are not highly educated, but need help in fighting Type 2 in their communities.

Great post Kerri... I wonder if they realized I was probably still DKA during that meeting. When good insulin goes bad

I guess that is my next blog topic

I haven't ever really gotten into any sort of advocacy role (yet) but it's certainly a goal of mine in the future. I'm just glad & lucky we as a community have such strong advocates out there on our behalf! So thank you! (All of you!)

YOU.NAILED.THIS. Love this post Kerri. We are all in this together. The support and the advocacy teaming between PWDs and type 3s is only going to make us stronger as a community. Hopefully that strength will be realized in legislation and funding dollars.

Kerri- I think my heart stopped for a minute. "Despite the fact that we don't look sick, we still deserve a cure." I love this. Sweets does not look sick. She looks like an ordinary 5 year old. But that does NOT mean she doesn't deserve a cure. I am in love with that quote! Can I use it in our walk video???

I, too, would have loved to have been there whe Jeffrey Brewer met Sprinkles! I was so incredibly impressed with him and I'm so glad I had the honor if hearing him speak in person.

I gotta get me a unicorn puppet.....

Awesome post!!! Reyna is right, you nailed this. You're an inspiration!

I'm not sure how to get started with advocacy. Which is really a bit sad since I work for a non-profit. I'm open to suggestions. :)

And if there was ever a time I wish I had captured the look on someone's face, it was at this moment. A mix of "Ah ha" and a total "Are you low?"

That one made me laugh hysterically....too funny! The rest is good too :)

Great post Kerri. For those of us with kids with diabetes, gov't day was an eye opening experience to view diabetes/jdrf through the lens of adults with diabetes...and to our kids in the future. It was engaging to discuss the topic and see how we can work better together toward the same goals.
- guy at gov't day with famous last name who isn't at all famous

I'm excited by the number of opportunities that seem to be springing up for us as advocates. Besides the D-OC, I'm working with my local JDRF chapter on Adult Outreach - with our first event inked on the calendar for next month. I look forward to fining more ways to advocate and support as well. (Maybe I should knit a unicorn similar to your crocheted one? Is a unicorn an Advocacy Requirement??)

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