The JDRF and the Online Community.
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?