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!

Paperwork

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!

 

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12 thoughts on “2011 Roche – Growing Potential, Still Vague

  1. I remember getting the IDF email earlier this year and immediately posted about it. For MONTHS I reached out to all my my FB/Twitter friends. I organized a fundraiser to support IDF and LFAC…posted it everywhere I could think of…

    I am VERY passionate about this cause. In fact, sometimes I find myself struggling internally when it comes to raising money for a cure, when so many people can’t even access insulin.

    It’s not that I don’t want a cure…sure I do. But my heart is heavy for this crisis.

    I did receive the IDF invitation, but was unable to attend.

    PLEASE contact me if there’s an initiative I can support. I’m a hard worker and willing to do anything. Stuff envelopes, make calls, stand with a sign in the rain pleading someone to pay attention.

    And, if you have a minute…I’d appreciate the help sharing this information…

    http://www.candyheartsblog.com/p/life-for-child.html

    Thanks

  2. thanks scott. i so agree about the idf and the big blue test.$75,000 is a lot of money and they did not have to do that. that was amazing.the IDF breaks my heart. i cant fathom a type 1 child with no insulin in 2011.i stand corrected as we touched on this and you make a great point.from the little i know and from what i can infer i feel ashamed to have it so good.
    i respect roche for setting no conditions.but every origination has a goal and we need to know what that goal is.if they just want to facilitate meetings with the impossible to see folks im good with that.
    enough with the foreplay its been long enough,its time for them to do the “deed”.
    thanks man keep up the good work and i think you all do a good “job”.

  3. Thanks for writing this, Scott. I think the group did go tough on IDF during the afternoon session, but I think it’s for the very reason you mentioned there: We feel/felt disconnected. It’s not that the group’s mission isn’t important, it’s that it just hasn’t really resonated with us the same way as other things have on a regular basis. While it’s not about us, the simple truth exists: US first, then blogging/advovacy (unless the stars align and this is our regular lives and job.) It’s tough. I’ve received the IDF news releases, but again when trying to reach out and get more, nothing happens. I’ve felt like I’m just expected to write or donate or do something, without anything more. Sure, I coordinate local WDD efforts and wear my blue circle and push to have local monuments lit up, and of course help on the video put together last year, but it all still felt pretty distant. This aspect of the summit and Jean Claude’s passion changed my heart on all this. I’m excited to reach out to Isabella and others more frequently, and work with them as much as possible. As far as continuing the advocacy in general, I think it’s important for us as writers online to share our stories so that more can be connected to the message. Then, we and they can take that message offline and work on it there, individually and as a group. That will all lead to change. These summits spark the discussion and relationships and we can continue building them locally as needed. It’s like connecting the dots. And I’m proud to be a part of that in whatever small way possible, and get more people in on what’s going on nationally and globally.

  4. Scott, I love your take on it all and thank YOU for going to Roche and representing all of us who couldn’t be there. When I think of summits like this, I always wonder,’then what?’cause if meetings don’t result in some kind of action plan, then what is it all for? I would have loved something concrete to happen at the end of the summit, what will everyone DO with this knowledge, what will some of the bloggers DO, what will Roche DO, what will IDF DO, that seems like productivity to me.
    I love your take on the group and IDF. I admit, I don’t know much about IDF myself, other than the blue circle, and I am open to hearing more. I agree, here we all sit in the land of opportunity, when we could have been born other places and not have access to insulin. There but for the grace of God go I. It’s humbling and I will keep it in the back of my mind now.
    I just wonder what Roche will DO with this information and what they learned, much as I wonder what the group who attended will DO with it. That’s the part I stumble on. It’s great you all went, but there is so much to DO in this movement, when will it all take off? Much like the Big Blue Test and Life for a Child, those are the DO. How can we use the summit to DO?
    Just my thoughts…

  5. Those are good questions Deano, and I’m not sure anyone has the answers.

    I’ve tried my best to answer all of the questions I’ve ever received about the summits. With the exception of you, and a few people wondering how they can get invited, nobody has asked me anything. Nobody.

    In terms of what happens next? Well, let’s take an example from this year. So at the summit my eyes were opened a little more around the IDF and their work internationally. I talk about that a little in both of the posts I’ve written so far.

    Maybe someone, somewhere, is inspired enough by the cause of the IDF that they make a donation that saves a life. We’ll never hear about it because why would we?

    But that doesn’t change the fact that a life was saved, does it? If you were the person in a third world country whose bottle of insulin came directly from my education at the summit, you wouldn’t have any questions about the murk.

    I think one of the main problems is that many of the ripples that come from these summits are not things that we will ever hear about. That doesn’t make it wrong, that’s just the way these things work.

    In terms of absolutely tangible results, the Big Blue Test video last year got insulin to 2000 kids. That’s a lot of help, and that whole effort came as a direct result of relationships formed at the summit.

    Another thing to consider. Now that I have met Isabella, if she were to approach me with something that she needs help with, I’m much more likely to take the time to understand and investigate how I can help her – because of the relationship.

    In the end? I am still confused about what people expect from these summits because you are the only one communicating with me about them.

    I am surprised that more credit is not given to Roche for writing a $75,000+ check last year for the Big Blue Test (that’s a big deal, but people are still wanting more!).

    I wish everyone was as open as you Dean, because then we could have a conversation about all of this and work through some of the murky feelings.

    Thank you Dean – let’s keep talking about it! Tell me more about your murky feelings, and lets see if we can get to the bottom of them!

  6. dam.it.i have to tell you all that i am not connected to the roche thing anymore.its way to murky.i think that here is where im separating from all this.roche is putting you all in contact with who ever and then what? you tell us.and then?what?we read your blogs and maybe choose to leave a comment and then.it ends.i cant imagine any of you bloggers can answer everything put to you.
    there are 2 different diabetes social media cultures.the forums and the d bloggers.i choose to frequent both.but many many many others dont.so who are all these messages reaching for the greater good. we have questions that never get answered about these summits.
    if the bloggers i follow dont write about what happened or if its later down the road well what then.

    lol this is becoming just like the phrase”there will be a cure in 5 yrs”

    the more this goes on the more confused i end up.whats the end game?
    p.r.?

  7. Scott, I agree that we were too hard on Isabella from IDF. I did look through old emails and found some from IDF, for some reason they didn’t grab my attention. You’re right, and I liked Jean Claude’s use of the word Outrage. I could have been born anywhere, but God placed me in Ireland. Diabetes care there is really good, and here in the US it’s even better. I think if I’d been born in Africa or many other parts of the world, I’m not sure I’d be alive today. This for the cost of 15 vials of insulin or so. That is truly outrageous.

    Good to see you my friend.

  8. You’re a wise man, Scott. Another excellent post. I hope that the group able to go to this summit is willing to bond with those of us who are new but equally motivated to help influence great change. Some of us don’t have the money to travel to personally meet others but we have the will to connect and to help 😉 Thanks for all you do!!!

  9. Great post, Scott, and you are absolutely correct that we have a responsibility to reach out to others who share our goals of better conditions for all diabetics.

    I believe that we, as a community, are starting to realize that we can indeed effect great change, but we can’t just sit here and expect the internet to come to us.

    I think this a good example of the type of stumble that we need to watch out for. I expect there will be more, no matter what organization the community is starting to work with; but if we our eyes focused on the goal we can all have success, no matter whether they be local or global in reach

  10. Thanks for this post. It expresses a few things that needed saying. I appreciate someone that sees the larger picture and realizes help is needed by others and we must advocate for them.

    Thanks again.