Roche Social Media Summit: Meeting My D-Family

by Leighann on July 2, 2010

Social Media Summit

I’m on the last leg of my return flight and I’m taking the time to write some thoughts about my trip to Orlando for the Roche sponsored 2010 Social Media Summit.

I am sure that you will read several accounts of the day’s activities and maybe you followed along on Twitter (#vaboard or #dsummit). But I think that the common thread that you will read is that it is so great to solidify friendships in person.

The diabetes online community is literally there for each other 24/7. Got a high or low BG in the middle of the night? Got an issue with adhesives? Problems at school? Need meal or snack suggestions?

They are there for you (and I’m also talking about the larger community because not everyone was represented).

With a chronic condition that can be isolating, these people “get it.”

Yes, this event was sponsored by Roche, but I have to say that I was impressed with the lack of push-your-product-down-my-throat (I’ve been to lots of “mommyblogger” events and this does sometimes happen) and their seeming desire to listen and learn from those of us in the trenches who actually use the products they manufacture. Even though some of us do not use their particular products.

I really felt that there was a two-way conversation as we discussed blood glucose meter accuracy (I will write more about this issue from the perspective of a child’s needs) and I was happy to discuss my opinions with one of their reps. I also told her where I think the Bayer Didget fails (more on that to come as well). The complaints I made about the Contour test strips were ones that she had never heard. I wasn’t knocking their competitor to curry favor but because I think they need to be aware of these concerns should they ever develop a similar product.

Because of DOC suggestion, six members of the American Diabetes Association (ADA) as well as two from American Association of Diabetes Educators (AADE) were given face time with us to have a dialog. The ADA session was valuable in my opinion. Some said they thought the ADA was more practitioner focused, less patient oriented. Others mentioned ways in which fundraising efforts fail.

Unfortunately the AADE sent us a PR person whose body language was a bit defensive and I think took our dialog as an attack. I don’t think she realized that we actually want to work together to make things better. The overwhelming opinion is that standards and requirements to become a CDE are prohibitive to people who do not have a medical background and that those of us with first hand knowledge would like to actually act in some capacity as educators. Perhaps this could be done through a different level of certification that was termed “community health worker.”

What we realized was that we were talking to the wrong people. It is not the AADE who sets the standards and requirements, but rather the National Certification Board for Diabetes Educators (NCBDE). Who knew? (Not us!)

I was only one of two parents of children with diabetes in the group which included both type 1 and type 2 adults. The other was Bennet of Your Diabetes May Vary (Hi, Bennet!). And though I would love to have met some more of my fellow D-Moms and D-Dads in person, which I hopefully will someday, getting to know these wonderful, passionate, thriving, successful adults with diabetes is incredibly reassuring to me.

When your young child is diagnosed with a chronic, lifelong condition such as diabetes, you suffer a loss. Loss of innocence for the child and grieving for the parents who know that their child’s life may be difficult.

I was first drawn to the DOC when I found Kerri Sparling’s blog Six Until Me and Allison Blass’s Lemonade Life. It was incredible to see these beautiful, smart, successful young women who were doing just fine despite their diabetes. It really gave me hope for my own daughter’s future.

It was actually meeting Kerri and Allison at BlogHer last year that gave me the push to start thinking about an insulin pump (and then finding the D-Moms on Twitter who were already pumping). In a lot of respects meeting them was life changing for both me and my daughter. She no longer has to have injections and from a caretaker standpoint, I find the pump to be much easier.

It was surprising that many of the PWD’s I met this week were looking forward to meeting me. You wouldn’t believe how wonderful it is when your Twitter/Facebook/blog friends come up to you and give you a big hug and it’s like you’ve known them forever.

I had many great moments. Many. But I think this little tweet exchange with Scott of Scott’s Diabetes Journal sums it up:

Scott Tweet 1D-Mom TweetScott Tweet 2

See photos on Flickr.

(Don’t worry, I have more to say. This is just my first impression.)

Disclosure: Roche paid for all expenses relating to this trip including travel, lodging, meals, and incidentals. They did not ask me to post about the trip and all opinions are my own. We do not currently use any Roche diabetes products, nor were we given any free diabetes products from Roche. Please read the D-Mom Blog disclosure statement for more information.
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{ 5 comments… read them below or add one }

1 Crystal July 1, 2010 at 11:00 pm

Well said, Leighann! It really was so amazing to meet you!!! Wish we had more time together. Ha, if you had said, D-MomBlog, I would have known first hand who you were. 😉

I did that last year, introduced myself with my Twitter handle.

Keep on keepin’ on.

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2 Michael Hoskins July 1, 2010 at 11:14 pm

Leighann – It was SO GREAT meeting you, as well as everyone else who was there in Orlando! I’m so bummed that it didn’t last longer, but felt so incredibly fortunate to have been invited and share in that experience. Scott is right: You’re daughter will be fine, and with this huge Diabetes Community online and elsewhere, she will always have a network of support to turn to no matter what. Life-changing and inspirational, indeed. I’ll look forward to seeing you around the DOC, and hopefully again at some point as the community and dialogue all continues!

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3 Sherry July 2, 2010 at 2:27 am

Wow! Thanks for this post. I’ve often thought how amazing it would be to meet people from the D-OC in person. The other day I really tried to envision a face to face with some of the people that have truly helped me cope. I’m quite certain if I were to ever see any of you in person I would weep like a baby. I think it would be like seeing an old friend again after many years apart!

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4 Penny July 2, 2010 at 6:34 am

Oh it sounds just fabulous! Interested to hear more about it and your experience. I am intrigued by the whole licensing of CDEs and how that all plays out when it comes to patient care. Sounds like a great trip and they are right, our kids will be stronger because of all of this!

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5 Sysy Morales July 3, 2010 at 7:55 pm

This site is phenomenal! I just discovered it. I am a type 1 diabetic of almost 16 years and I have a younger sister who has had it for 16 years as well. I just interviewd my parents for my blog talking about what it has been like for them raising my sister and I to adulthood with type 1. I think your site is a great resource for parents of children with type 1 diabetes and know my parents would have benefitted so much from something like this. Thanks for what you do 🙂

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