Scrambled Brain

The Johnson family returned from the 2011 Friends for Life conference late on Sunday. My brain is frantically trying to process all of the magic that I experienced, and I’ve been crazy busy catching up on home stuff. I feel like I need a good solid week of quiet time just to pull myself together.

As I work through everything, I’d like you to take a look at Kerri’s recent blog post about the International Diabetes Federation (IDF). At the 2011 Roche Summit, just weeks before the Friends for Life conference, we met with both Isabella Platon, Head of Communication for IDF, and Jean Claude Mbanya, President of the IDF.

I hope you get a sense of how much impact they had on us and that you start to pay more attention to them.  One easy place to start is with their “O is for OUTRAGE” campaign.  I’ve already sent my postcard.

As I become more educated about them and their work, I’ll do my best to share it all with you.

2011 Roche – Growing Potential, Still Vague

Manny pretending Scott's bald head is a crystal ball

Manny trying to read the future in Scott's crystal ball

As hard as he tried, Manny Hernandez could not see what was in the coming days of the 2011 Roche Social Media Summit.

I bet he got pretty close though.  Friends, fun, relationships, the greater good, and the sense that we can influence change.

I personally felt that this, our third summit, was the best yet.   Nurturing relationships is part of what makes these in-person meetings important.  But as a group, it seems that we were better prepared to handle the excitement of seeing each other in person again, and didn’t let that get in the way of  a productive summit.

For the most part, the group was all about figuring out how to make change happen.  I could feel it in the room, and I loved it.  We are starting to trust Roche Diabetes more, thanks to the work Todd and Rob put in through the year, and how they respect us at the summits.   I felt this year was even less about Roche Diabetes, and more about them (Roche) being able to facilitate good things.  Do you see why that is important?  They understand that the way to gain our trust and respect is to show us that they are about the greater good – not just increasing Roche’s bottom line.

And by working towards helping more people with diabetes, they are growing their bottom line.  And that is Ok!  We need companies to make money from diabetes or else we will be abandoned.   Unfortunately, there will always be more help needed than is available, but taking steps to do what they can is important in my opinion.

Advocacy is Education

We are all advocates.  All of us – not just the small sampling of people at the summit.  If you live with diabetes, you are an advocate.  By living your life you are telling a strong story.

So much of advocacy is education.  Us educating people without diabetes.  Organizations educating us about their missions and goals.  All of us educating decision-makers about why diabetes is not Ok.

For the past two summits, Roche has gotten us an audience with some important organizations.  Last year was the ADA and the AADE.  This year was JDRF and the IDF (International Diabetes Federation).  I wrote briefly about my thoughts with them already, and I am thankful to have had the opportunity to be educated.

I was frustrated by our group’s behavior when Isabella Platon, Head of Communication with the IDF, presented.  The group pretty much jumped down her throat for not having better relationships with us.  I call bullshit on that attitude, and ask that WE realize that they are very busy finding ways to keep people from dying because they can’t get their insulin.

We have responsibilities to help them too – advocacy is not a one-way street.  As people who have found a small channel to tell our stories, we need to step up and pro-actively help organizations that need it.  Shame on us for being so full of ourselves that we have ignored kids dying from lack of insulin.  Shame on us.

Still Vague

While I felt the cohesiveness of the group coming together, I also felt a desire to channel the energy towards something great that we weren’t quite able to catch.  We spent a short amount of time brainstorming, and we got close to a lot of great ideas.  But that was about it.   Just close.

I think we might have been trying to force magic, when that’s just not the way it works.  The world has huge, possibly unrealistic, expectations coming from these summits, and I think we all feel a lot of pressure to deliver.  But deliver what exactly?  Proof that we’re not bought and paid for?

I’d like to hear from people more about what they expect to come from these meetings?

I think the relationships we are building are very powerful examples of great things coming from them.  And let’s not forget, not everything that is a result of these relationships is tangible.  What about empowering someone to live their life with diabetes through a story we tell, or experience we share?  That’s something.  At least I hope it is!


Roche Diabetes paid for my travel, meals, and accommodations for the summit.  Roche did not pay for the couple hundred bucks in overdraft fees resulting from the hotel’s hold on my bank card (free travel is never free folks – this stuff costs me money I don’t have).  Roche did not ask any of us to write about anything, even though they knew we would (and we’re totally happy to do so).  Roche did not put any conditions on what we write about or don’t write about.  Todd & Robb, Adam & Jill – thank you all!  Everything was well organized.  Lisa!  We missed you!  Also – big thanks for making DSMA and DSMA Live hugely successful and historic!


We’re Just Beginning – 2011 Roche Social Media Summit

@RotoTok says “you guys are just beginning to understand how powerful you are when you come together and work on an idea” #dsummit

JDRF President & CEO, Jeffrey Brewer, spent lunch with us. How brave to submit himself to an open Q & A session with a bunch of rowdy social media advocates! There are many things JDRF is working on that most of us have no idea about. I find a lot of hope in that.

But nobody knowing about these efforts leads to a lot of unfair attitudes towards JDRF. It seems Mr. Brewer knows this, and is working on better communication and education.

Just before lunch we heard from Isabella Platon with the International Diabetes Federation. These guys are providing so much to so many in need, yet we know so little about them here in the US.

@scottkjohnson: I feel very distant and disconnected from the IDF, and I want to change that. They need our help, and we need their reach. #dsummit

Their President, Jean Claude Mbanya, was able to share a few words with us at dinner, and it was very moving. There are people dying every single day because they can’t access insulin. Something so many of us take for granted.

That should not be happening in 2011.

At the end of the day? There are so many important causes, and not enough resources to work on them. How do you choose where to spend your energy?

How do you figure out where you can make the most impact?

How do you make sure you’re not spinning your wheels and not making any difference at all?

How can you ignore any area of diabetes advocacy and still sleep well at night?

How do you choose?

How do you choose.

Roche and Relationships

One of my favorite people to visit with is Bennet from Your Diabetes May Vary. Two of his four kids live with type 1 diabetes, and he lives with type 2 diabetes. He gets it. He’s brilliantly smart, is passionate about diabetes advocacy, and is not afraid to call bullshit when he sees it.

He said something to me earlier today that has stuck with me through most of the day. He said that one of the biggest things Roche gives us is something I know I didn’t fully appreciate; the opportunity to get to know each other better.

He didn’t mean Roche and the attendees, although that is valuable too. What he meant was US getting to know US better.

We have something very special in the Diabetes Online Community. We have an environment full of love, support, encouragement, empowerment, and inspiration.

It starts with the common bond of diabetes, is actively nurtured by the open and honest sharing we all do online, and is amplified by getting to know each other better.

Great things, such as Kim’sYou Can Do This” project, and Sara & George’sBest of the ‘Betes Blogs” project (as just a couple examples), come from the relationships we build during events like this.

Thank you Roche.

2011 Roche Social Media Summit

I’m heading out to San Diego, CA for the 2011 Roche Social Media Summit. My faux-beard and I are waiting at the gate to board the plane.

I’m most excited about seeing my friends and family, catching up, and trying my best to spread positivity and encouragement.

I’m also excited to hear more about what Roche has been up to, and what ideas they have for the upcoming year.

I’ll report in as often as I can, and many of us will be tweeting right from the event (#dsummit is the hashtag for the event).

Talk to you all soon!