Until next time.
SUM stuff from around the Internet:
“The latest in this trend is the meme showing a fat little girl titled ‘Lil Diabeetus snacks’ as a take-off to Little Debbie Snacks. It’s being bandied about on FaceBook as ‘cute’ and ‘funny’; an appropriate name change. Is it funny? I don’t think so.” Kate weighs in on the Facebook meme.
Tuesday’s #dblogcheck was a community success, and seems to have woken up many of the sleeping bears (if you want to picture blog commenters as sleeping bears, which I do, because that’s adorable). Check out Chris Snider’s excellet Storify recap of many of the blog posts and be sure to say hello on some new and old blog favorites.
Wendy’s daughter has gone to Clara Barton Camp … and she’s also gone BIONIC.
“Athletes inspire kids with diabetes at Friends for Life Conference” is the title of this video, but I’m going to assert that adults are pretty inspired by Charlie and Jay, too.
“Her former team dismissed her for having diabetes. Her coach and teammates stood by her and struck out on their own.” Read more about Rebecca Young here, and consider supporting her!
I sent emails to my representatives. Now it’s your turn.
This post from Meri is a call-to-arms, and I’m ready. “The Movement Has Begun.”
JDRF appoints Derek Rapp as new President & CEO – here’s more information on this change in leadership from the mothership itself, and a post about the changing leadership of ADA and JDRF on Diabetes Mine.
“Why Should Diabetes Advocates Enter This Food Fight?” Hope Warshaw explains.
“ADA and others have sent in their comments, but the FDA needs to hear our individual voices as advocates.” You can give the FDA your thoughts on the proposed Nutrition Fact Label, and you have until August 1st to do so. More on the how, and why, at Diabetes Advocates.
The FDA will host an online conversation (“A Virtual Town Hall”) for people with diabetes on November 3. And, according to the crew at diaTribe, they want to hear from you! Click this link for more information and the link to email diaTribe, and you can also join the conversation on Twitter using the #DOCasksFDA hashtag.
My favorite part of this video? “I can read.” Love, love, love.
During one of the discussion groups at Friends for Life, one of the attendees took a look at their Dexcom, gave it an exasperated sigh, and threw it into the middle of the room in frustration.
“I don’t want it near me.”
There was a brief pause.
“Ante up,” someone quietly said, their own Dexcom case hitting the floor alongside the first.
And within a matter of seconds, a diverse pile of diabetes devices met in the middle of the floor in solidarity.
This is Friends for Life.
In the last ten years, the DOC has evolved from a small pocket of voices to an entire choir that can’t be housed in one town, or state, or even country. I love seeing more hands raised and more people saying, “Me, too!” and providing support and understanding for one another. Patient stories matter. Our stories matter.
The DOC is also becoming more diverse, more inclusive, and more action-oriented, moving these online conversations to offline endeavors, making a tangible difference in the world of diabetes. I’ve seen the start of this kind of change, and the tides are rising beautifully. And with it go all of our boats.
But there’s more work to be done. Which brings me to Masterlab.
In a few days from now, dozens of diabetes advocates will bring their voices to sunny Orlando, Florida to participate in the Diabetes Hands Foundation’s Masterlab program, which is about “building a sense of what is possible and creating a formula for successful diabetes advocacy in the future.”
My response? Oh hell to the absolute yes. I asked Manny what the impetus was behind Masterlab, and he said that he’s hoping to address the “squeaky wheel” mentality of advocacy … namely, helping diabetes advocates make the wheel squeak more.
“We are in dire need of people who will tell their story, who will come out of their caves and tell to FDA, CMS, NIH, or your-favorite-alphabet-soup, the ways in which a particular drug, device, therapy, or research affects their lives. Maybe it’s not the A1c or the cardiovascular risk, but being able to live through less hypos or not having to take a shot. But we need more,” he said.
“We need advocates willing to speak where their voices need to be heard. We need people who can wear their passion “like a sports coat” (as Glu’s Dana Ball would say), balancing it with solid data to support their views packed with emotion. But we need more.”
The Masterlab takes place on July 2nd at the Orlando World Center Marriott from 7 am – 5 pm and is free for anyone who has already registered for the Children with Diabetes “Friends for Life” conference. (If you would like to register just for Masterlab, the cost is $50. You can register here.) The full agenda is listed here, but if that’s tl;dr, the topics include Today’s Diabetes Advocacy Environment, What Has Been Accomplished by Other Patients (and How), Getting the Attention of Decision Makers, and Mobilizing the Diabetes Community, plus several others.
Manny added, “We need everyone behind the voices speaking on behalf of the community, providing an echo effect, to amplify our voices and make sure that there is not a single corner in any government office that has something that it could be doing to help more people touched by diabetes that doesn’t hear about it. Putting in place the building blocks to start making this vision a reality… that is what Diabetes Advocates MasterLab is about. I hope the event sells out… because we need more.”
Your voice matters. Use it.
Bringing Birdy to the Friends for Life conference was awesome, because I was finally able to introduce my bonkers Birdzone to my friends in the diabetes community. (And by “finally,” I mean in a way that counted. When I brought Birdy to the conference when she was two months old, it barely counts, because she was more in the “burping and pooping and sleeping,” which she’s still into, but in a different capacity. Except the “sleeping” bit. She’s not really into that.) This year, my daughter was part of the party.
This year’s Friends for Life conference was different, for me. With my mom and my daughter traveling with me, my perspective was skewed, seeing the conference through my own eyes (as an adult T1D PWD and faculty member), my mother’s (the parent of a grown-up CWD), and my daughter (the kid of an adult T1D PWD – holy acronym). I watched as my mom worked to find her footing, immersing herself into a large network of other parents, even though her own kid was now grown. I watched my daughter reintroduce herself to some of my favorite people, like Scott and Christel, and hug them fiercely. I saw how Friends for Life could touch the lives not just of people living with diabetes, but for the people who care about the people living with it. Because they’re also living with it.
As part of the conference team, I was responsible for co-leading several sessions, including the impact diabetes has on dating, a discussion about pregnancy, one about parenting, and a session on social media and the diabetes online community. These discussions always serve to reignite my passion for connecting with other people who have diabetes, and talking about ways to improve our collective experiences. (That, and they’re fun.) More on these talks later, as I unpack suitcases and reclaim the parts of my brain that smash words together.
It’s a busy conference – lots of running around – and the breaks are brief and coffee/glucose-tab fueled. There are so many people there that I want to talk to, and so many that I want to give huge “thank you” hugs to. Running from session to session, with stop-overs at daycare to bring Birdy to the bathroom and then drop her back off with the other little kids, I felt like there wasn’t ever enough time to do or see it all. I wanted to slow everything down, but the week rushed by at an incredible pace that left me hoping for ways to stretch hours into days.
It’s sometimes too much, trying to find words to describe how this conference has changed my life over the years. I knew I wasn’t ever truly alone, but sometimes diabetes can capture you in a cage of isolation, making you feel like even small changes are too big to make. But then you look around, right? And you see the sea of green bracelets on the wrists of people whose pancreases are the same as yours, holding tight to family members with orange bracelets, and becomes more than diabetes. It’s more than insulin. It’s more than meters.
On Thursday night, at the FFL banquet, Scott and I were honored with the Friends for Life award, recognizing our work on our respective blogs, and also in helping to bring the “adults with type 1” track to life for the conference. That night, I couldn’t figure out what to say. Even now, a few days later, I still don’t know, other than a “thank you” that doesn’t even begin to scratch the surface. But I do know that those awards stand to recognize not just individuals, but what the DOC has done and changed over the last decade. Every voice matters, and every story heals. For me, sharing these stories has been part of the prescription for good health. Being part of this community has improved the way I manage my diabetes, and I am forever grateful.
Our lives are all different, from those without diabetes, and even within our own diabetes community. In a week at Friends for Life, we learn that our differences can be empowering. And our sames can be uniting.
“Mawm, I wuv confwences,” Birdy told me, spinning the orange bracelet on her wrist.
I touched her orange one with my green one, and she smiled. “Me too, love. Me too.”
Copyright © 2014 Kerri Sparling & Six Until Me. 2005 - 2013 . All rights reserved.
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