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Finding Your Voice Online.

Last Wednesday morning, Amy from DiabetesMine and I co-lead a focus group at the Friends for Life conference called "Finding Your Voice Online."  The group consisted of a bunch of d-moms, d-dads, and some kids with diabetes who sat in on the session, not to mention some terrific diabetes bloggers (Heidi, Scott, Chris, and Bernard).  And then there was Amy.  And me.  (And my enormous iced coffee - so necessary.  Apologies to everyone who realized I was way over-caffeinated by the end of the presentation.)

Amy opened with an introduction to her blog and her work in the diabetes community, and I finished with my story of how I ended up immersed in the blogosphere.  (Slides below.)  We shared how we 'got started' with blogging, and what kind of opportunities have come as a result of our efforts.


I've spoken at different conferences before, but the Children With Diabetes conference is different.  Its core audience isn't someone with a Pharma agenda or something to sell - the people who go to the Friends for Life conference are people with diabetes, and the people that love them.  They're the people who are affected every day by diabetes, and if this conference had existed when I was growing up, I would have had a completely different perspective on my diabetes.  The FFL audience cares not only about new research developments, but about the real life of a person with diabetes.  Their kids are more than their disease, and I hope they found some comfort in seeing two adults who were more than their diabetes, too.

As I clicked through my personal slides, I talked about my life and my marriage and my stupid cat.  And then I shared with them what I was most proud of:  my daughter.  "When I was first diagnosed, back in 1986, my doctors told us that my having children would be near impossible.  But I am so proud to say that I proved that you can have a healthy baby, even if you have diabetes."  And her little face, grinning out from the slidedeck, proved to me once again why people with diabetes need more exposure to others living with diabetes.  It feels so empowering to know that you can do anything - have a child, drive a race car, fall in love, climb up Everest! - even if you are living with diabetes.

Bloggers at Friends for Life
Bernard, Amy, Kerri, and Scotty J!!

The parents in the audience had a lot of questions, and many concerns were about online privacy.  We talked about the decision to share or not share our child's name or photo with the online community.  "For me, I decided that a few photos here and there were fine, but I wasn't comfortable subjecting my kid's name to Google just yet.  I want her to make that decision for herself.  But I'm like any other parent, and it's hard not to share my little kid with everyone!"  

One parent talked about her decision to make a JDRF walk fundraiser video, and how she had mixed feelings about the level of exposure.  

"I think that we're all safe in this diabetes community, but I need to remember that there aren't just people with diabetes who are reading my blog."  I said.  "Sure, the patient and medical community might be reading our posts and watching our videos, but there are also some completely random people who might be logging on.  And while we're safe within the 'borders' of the diabetes blogosphere, the Internet as a whole isn't quite as safe."  

Some parents had questions about starting their own blogs and getting involved with the diabetes blogosphere.  Others had questions about how to raise the awareness of their existing online properties.  Amy and I walked them through different resources for developing their online voice.  

I have always been a huge supporter of the Children With Diabetes efforts, in particular the Friends for Life conference, and having the chance to speak at a focus group was more than an honor  - it was like coming home.  Thanks to Jeff and Laura for hosting us, and thanks to all of the discussion participants! 

Comments

Kerri, what a wonderful event and presentation. I am so glad that you are out there talking to both kids and parents. Parents do need to hear the benefits as well as the safety precautions that the internet can offer their kids and kids need to hear about how "normal" your life is; from your cat to reaching the dream of having a baby. My son is 7 now, and just yesterday my husband and I were talking about how you never know WHICH conversation we have with him that will "stick" with him years later, as we talk about driving safety or drinking, etc. (We were discussing why so many cops were on the roads during the 4th of July weekend). I am sure that for many of the kids they will remember you. They may not specifically remember all the wonderful things you said (sorry! they are kids...) but they will remember you - your attitude, your goals, your dreams, how you reached them and more than anything perhaps--that you cared enough about THEM to come and talk to them. On behalf of the online patient community, THANK YOU from me!

Great picture! I assume that it is a pre-spitup picture of Scott ;)

I think is so great that you and Amy were there to help raise awareness for the support and friendships that the on-line diabetes community holds. I hope you've sparked a few more people to start blogging too!

It was a great presentation, Kerri, and trust me, you were not the only one there that was over-caffeinated! You were honest and truthful and as always, entertaining. you have inspired me to re-start my blog that has gone dormant for too long. Thanks for adding to my FFL experience!

You and Amy gave some good info & it was great to hear the point of view from the crowd. I think a lot of folks are interested in telling their stories... thanks to you. And, many also want to provide "feedback" on the technology... thanks to Amy.

You two hit it spot on -- the d-community now has a strong voice!

Glad to finally meet you & talk more soon --J

I suffer from chronic fibromyalgia and seeking friends to help me that my pain is less painful, their friendship helps me a lot ...

Kerri

I only managed to catch part of the presentation, seemed full of energy and enthusiasm. I'll have to talk with you about CWD and presenting. Jeff's picture of us is THE BEST.

I wish I had been there (either in the audience or as part of the panel) as a parent who blogs about raising a child with diabetes. Sounds like a great session!

And you are right: it is incredibly comforting to see someone like you who was diagnosed as a child and turned out ok ;) It helps us know that our kids will be ok too.

I wish I could have been there as well. I think when you blog about your child(ren) you need to find a balance. I am not freaked about sharing my kids names. Anyone can find them with or without my help. The issue is more of what you share. I don't share intimate details of daily life, however (with their permission) I do share details of their diabetic life. I think if a parent wants to blog, they have to open up a little bit or the blog is not very useful to others. Again, it's about balance.

I too very much enjoyed the session. Both the material you & Amy presented, as well as all of the input from the audience.

I have really enjoyed watching the diabetes online community grow over the years. There are so many talented people who are sharing their stories! It adds a lot of value to my life, and I'm thankful for every single one of them.

I am thankful for both of you, helping answer questions and provide information to those that may be thinking about starting - the more the merrier in my opinion!

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