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Monday, July 9, 2012

CWD FFL12: What do these acronyms mean?

Hey, y'all.


[Yeah, I'm a native New Yorker who says, "y'all." It's true! Ridiculous.]


So, I just got back from the Children With Diabetes Friends for Life 2012 conference: just what the acronyms in this post's title stand for. Aside from a jumble of letters and numbers, it means something AWESOME. It was a great time: I got to meet so many wonderful folks who are a part of my on-line life every day, and who have now become a part of my in-person life, too. I met some truly rad South Dakotans, Oakland-Californians, and Minnesotans. I heard from amazing clinicians, doctors, and researchers. (There *is* hope for a cure! And, I am more confident than ever that it will happen in this lifetime.) I met some awesome folks who are developing great, effective, good tasting, more healthy, less chemical-ly products for people with diabetes. I met outstanding parents of children with diabetes (three of whom are here, and here, and here), and sweet, caring, and empathic partners of people with diabetes who also became fast friends. 


In short, the acronyms mean it was a pretty friggin' moving experience.






Since so many DOC members have already written about the conference (for just a few, see: Kim, Kerri, Kelly, Karen, [wow-- all K's], Martin, Jess [way to go, Martin and Jess, you mixed it up!]-- friends, yes, who I feel as though I will know... for life), I thought I would share a follow-up response to an email asking for our feelings about the conference sent from Laura Billetdeaux, one of the founders and now VP [of] Education and Programs at Children with Diabetes. Both Laura and Jeff Hitchcock, founder of CWD, impressed me beyond words in their ability to organize, manage, present and inspire. I also felt an immediate connection with them: I heard in their words, and saw in their emotion my own parents: their fear, their hope, their frustration, and their pride. I thought it would be helpful to know about what Laura asked of us post-conference, and where my head is regarding the future of my life with my fickle friend, the Big D.


Here goes nothin'.





First, Laura's prompt:


"I would love to hear your thoughts about this year's conference. Very open-ended - just want to know what went well for you and what we might do better next year!"





And, my thoughts:


Hi Laura,

First of all: THANK YOU to you, Jeff, your families, and the CWD team for such a wonderful conference! It was my very first, and definitely not my last. I hope to bring my husband and at least one of my parents next year to attend as well. It was an incredibly meaningful and special experience-- one of the best diabetes events that I have had in my 25 year diabetes 'career.'

My name is Kate, I am 29, and I live in Boston, MA. I saw you and Jeff buzzing around a ton over the course of the week (how you are still standing is beyond me!). I admired you and Jeff from afar, often thinking, "I should introduce myself," but whenever I saw you, you were talking with parents, and I know just how much support they need. I only wish my parents had this type of support and experience when I was newly diagnosed at age 4. In fact, my folks knew just how important of an experience this was for me to have, and they helped me pay for the trip and conference so that I could get something good out of diabetes: something so arduous, frustrating, frightening, and anger-inducing for anyone involved, PWD or not.

I'm excited to watch this conference grow 'as an adult.' I know that there will be programming for children for years to come-- both newly diagnosed and children who have had this condition for years-- but, I am excited, and appreciative, that you are all thinking about programming and support that both younger and older adults need, as you both have children with diabetes who are adults now. 

I recently became a member of the DOC (I blog here). I am an "information specialist," (i.e., librarian), and I was so surprised (and frustrated) with myself that I didn't think about using social media resources like blogs, Twitter, Facebook, etc., as for networking and support before this past year. I'm lucky to live in Boston, and go to the Joslin Diabetes Center for management and treatment, but I knew at this point in my life I needed more than just treatment and management.

CWD is just what I needed.

I needed to hear about developments in research-- not just read about them in journals and talk with/read about endocrinologists and gastroenterologists and auto-immunologists, ad nauseum.  I needed a place to connect with a whole bunch of other T1s at once. I wanted to hear about what all sorts of people are doing, and how they are developing products and working on cures. I needed a big ol' reference point so that I could start to dive in and do my own research (how I guide patrons and students in my library), and CWD fulfilled all those requirements and more.

I look forward to becoming more involved with the organization, writing more, researching more, and attending many more conferences and gatherings in the future. I wonder: might it be time for an AWD conference (Adults With Diabetes)? [I know this is easier said than done.] I appreciate the ├╝ber-supportive programming you had for us this year... but I felt we had *just* enough time to really dig in. Every person with diabetes has their low moments... and, "Dealing with Diabetes Burnout" was great... but we just scratched the surface. At the very end, Jill Weissberg-Benchell asked, "How do we start disassociating some of our destructive feelings with our diabetes management? How do we start disassociating some of those not-so-helpful behaviors with our more destructive feelings? How do we motivate?" I thought to myself, "FINALLY! She's asking us the right questions! Let's share some answers!" And, then the session ended. Kerri's session about pregnancy, and both Kerri and Scott's session about parenting were awesome and informative for those of us thinking about sailing that boat, but again, we just scratched the surface. What about getting some older (meaning people who are between 40 and 80) involved to talk about living with diabetes long-term? What about getting some doctors in who have worked with patients well into their adulthood, middle-age, etc.? I want to know what is coming down the pike. Maybe a session for parents of adult-children with diabetes? We all know that parents need support and a place to trade stories, just as the people with diabetes do-- at any age.

Along those lines, but not relative to adults-only or children-only, but what about having some sessions with folks like Gluco-Lift, or other people/companies who are concerned about the actual nature of diabetes products, or the sustainability of diabetes products? Getting Animas and Medtronic and the FDA in to talk about how best to use and recycle diabetes "waste" so that all this plastic can be recycled and repurposed? Or, if not a completely separate event for adults, having some scheduled time for concerned parents of adult-children to ask adults of all ages what living with diabetes is like?

I know how overwhelming evaluating and analyzing these types of responses can be. I would love to become more a part of the CWD (or AWD!) community, and would love the opportunity to contribute to the conference and relative events. I hope you realize how genuine I am in saying this, as this conference knocked my socks off, and I want nothing more to further the mission, and to help and connect with my fellow d-community members.

Thank you-- and the team-- again for such a deeply meaningful experience. I look forward to being in touch and hopefully seeing you next year!

All best,
Kate





17 comments:

  1. You're a pretty awesome resource. Nice to meet you! I still don't know how we went so long without knowing each other. Sheesh.

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    1. Thanks so much, Scully! It was awesome to meet you-- and, I, too, don't know how we went so long without knowing one another. Looking forward to hanging out some more!

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  2. Nice post. It seems like it was such a great, helpful, meaningful event for you to attend!

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  3. Great feedback, Kate! And it was wonderful meeting you IRL!!

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    1. Thanks, Kim! :) So great hanging out with you!

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  4. Excellent post, dearest friend! It's so fun to read all the recaps of the weekend. Hope you and Paulie (read: in NYC accent, as best I can) are well!

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    1. YAY! Dearest friend! So, when can be plan this SD trip??! Paulie and I are doin' just great (read: in NYC accent); hope you and A. are easily back into the swing of things, and hope that it isn't too blazing hot out there!

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  5. Wow, I wish I'd read your letter before I sent mine!

    Very well said. If I get an invite to talk, I'll know it was all you!

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  6. Chris! I am so glad you were there! We didn't get to talk much about GlucoLift, but I think it's high time that the diabetes community start paying attention to all the chemical crap that is in "healthy" or "required" food-- starting with glucose tabs! I just ordered some off Amazon today, and am excited to share them with our little d-group in Boston to support. I am thinking more and more about incorporating my family's sustainability careers and efforts into a 'career' in diabetes, and think it's just so cool that there are people and companies like you out there. Looking forward to seeing you soon-- somewhere around the country-- and talking more!

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  7. i am so, so, so happy you were there! glad you had such a great experience, and so thrilled we got to meet! :)

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  8. awesome ideas! i second them all. it was so great to meet you! wish, as always, it could have been longer. ps. i love that you say y'all :D you'd fit right in in Texas...

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    1. Yay! Thanks, Shay! It was great to meet you, too... Who knows? Maybe I can come visit Texas and put my y'all skills to work and we can hang out some more :)

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  10. I love your ideas for the next conference--and I'd go to anything that charming Gluco-lift duo put together!

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    1. Right? I just ordered me some Wildberry! :)

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  11. Gah, now I feel really guilty for not having sent a feedback email . . . ;) I'm thankful that you went along such great suggestions. And I agree with Katy, I'd follow those GlucoLift guys anywhere. :)

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    1. Next time (rather, next year!!) we can team up with a reply, Karen :)

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