2014 Diabetes Advocates Forum: Part 2

medtronic-14As I said in my previous post about the Diabetes Advocates Forum, we heard things from Medtronic and we also heard things from each other.

It took very little effort to transcribe the few notes I took about the technology aspect of the Medtronic Diabetes Forum. The difficulty I have in sharing (more than my initial thought) what those in the room said to each other comes down to this:  I am still processing what it means to us as a community and to me as a person.

Brainstorming

The afternoon of the first full day was spent in a brainstorming session led by Bennet Dunlap, George Simmons, and Scott Johnson. Rapid fire, small groups, top answers. We made fast work and faster decisions about what we saw as ways to use social media and our voices, but one of the questions (and one of the brilliant answers given by Sara Nicastro) caught me off guard.

To paraphrase, the question was this:

“What can you, as an individual, do to help the community as a whole?”

Sara’s answer stunned me. “Get the F* offline.” (If you know Sara, then you’ll realize that she doesn’t curse. She used the notation F* to mean exactly how serious she was, but she didn’t actually use the expletive.) Sara is heavily involved with her local JDRF chapter and did an incredible job fundraising for the JDRF walk. She recognized her strength and is looking to bring that spirit to her local offline community. (While spending a ton of time sharing her talents online as well. I’m in awe of people like her – and her.)

Others shared their thoughts and ideas and we came up with a doable list, although it won’t all happen at once or even this year. I see each of the ideas forming into concrete plans broken down into workable pieces, some of which will take funding while others will take people power.

The Ask

The second afternoon was handed over to David Lee Strasberg of the Lee Strasberg Theatre and Film Institute. He’s a T1 and a T1 parent, so he’s part of the club that no one wants to be in…two clubs, in truth. Strasberg’s father, Lee Strasberg, trained a lot of the great actors using the “method acting” technique and his methods continue today. David used his skills and talents to teach something that may seem simple, but isn’t: asking.

According to Strasberg, there are four steps to asking:

  • Build the Relationship,
  • Share the Vision that connects you with the others in the relationship,
  • Communicate the Opportunity that is borne out of the Vision, and then…
  • Ask.

The room buzzed as we participated in various exercises to see how these four steps could be accomplished  and then it buzzed even louder as the group put it into action. The Spare a Rose campaign is coming up again and ideas on how to kick it into high gear whizzed around. People threw out suggestions while others grabbed those suggestions, saying: “I got it.” It was electric. Magical. Inspiring.

That’s what happened at the meeting when the advocates there talked to one another.

Vexed Introspection

As all of this was happening, I got introspective (and apparently my face looked “vexed”, according to Kerri). My head veered into a dark space, where I recognized that while I have no problem with “the Ask”, I completely and utterly suck at the Relationship part of the equation.

When I worked into an office environment, my staff knew that they didn’t need to couch their requests or build up to what they wanted. When they knocked on my door, they were ready and fired away. That’s how I liked it. We were all busy and they knew that I trusted them to get stuff done, so if they needed something from me, they got it (if it was reasonable and within my power). I’ve been told that I can be assertive and a bit abrasive. My filter to social niceties can be warped at times.

It’s not always like that in the world, of that I know. For as forward and raucous as I can be with my friends, I’m not big on small talk and feel awkward in some social settings. (In fact, it happened at the forum. There were people I wish I had gotten to know better, but I flunked the “put yourself out there” portion and missed a lot of opportunities.) I’d much prefer to be plunked on a stage in front of hundreds of people, as I’m more comfortable sharing and baring my soul (and my requests for help) when I don’t have to look into the eyes of the other person.

So, my answer to the question about what I can as an individual to help the community as a whole is to work on the Relationship building. I’ve got to reach out and connect with other advocates, people in the diabetes space, and government. It’s a scary proposition and challenge for me and one I know will take a lot of effort on my part. But it’s worth it if building a relationship helps the community as a whole.

Community

Every single person who attended the Medtronic Diabetes Advocates Forum is talented and extraordinary, including the members of the Medtronic Diabetes team. It’s my hope that as we build relationships with each other to create a groundswell for diabetes advocacy, we build friendships and learn from each other as well. I couldn’t do any of this without the inspiration and support from the entire community and the champions that sat in the room (and many of those who were virtually there).

Asking is easy for me, so I’m asking this from you: Help me learn how to build strong, lasting relationships that can help this community be a undeniable force. 

(And help me achieve better blood sugars. Wait. Is that asking too much?)

 

 

It Ends With Us

1218864_75194824It ends with us.

Whether you physically sat in the room at the Diabetes Advocates Forum or joined us there in spirit, I tell you now. It ends with us.

We will be the ones to end the feelings of frustration with diabetes, the barriers to affordable access, the misconceptions of this disease, and in the future, the disease itself. However long it takes, whatever needs to be done, it ends with us.

After two days of intense, emotionally-charged meetings between key members of the Medtronic Diabetes team and invited diabetes advocates, this phrase is what remains in my head.

It ends with us.

Bold statement, you say. Brash statement, you say.

About time, I say.

I understood before the meetings began that we would be discussing the new Medtronic Minimed 530g with Enlite and discussing diabetes advocacy, but beyond that, no clue. I knew that Medtronic Diabetes and Bayer HealthCare had selected members of the diabetes online community (DOC) regardless of insulin delivery system and CGM choice. (You heard Dexcoms  and different beeps and boops going off throughout the sessions. Ahh, the sultry song of diabetes.)

Those who attend as well as those who don’t often wonder why these individuals were chosen to represent the diabetes contingency. (I see the questions on Twitter and the comments on blogs and other social media portals.) I still don’t have an answer on that, but we all had one thing in common: passion.

And that passion wasn’t just coming from the advocates. It came from almost every person I encountered with a role at Medtronic Diabetes. They do want to know what we think, not just about their products and how they present them (and we didn’t disappoint in our answers, believe me), but about how they can help. Not air quotes help, but real how-can-we-use-our-voice-to-help.

Not once did they try to sell us something. Not a product or a line or lip service. The Medtronic Diabetes representatives were frank and forthright, matching the honesty of the attendees. I heard apologies for missteps and long waits for better CGM sensors for their products. I heard requests for better ways to communicate. I heard agreement towards greater participation with advocates to reach goals.

There was laughter. And tears. And a lot of beeps. We all scribbled on notepads and tapped on smartphones and laptops. Sessions occurred in which decisions about future advocacy initiatives were identified and visions questioned for clarity. Some of my moments of ah-ha! came not in the meeting, but in sidebar conversations. Advocacy happens everywhere.

I’ll get to the nitty-gritty of what happened in later posts, but I flew home with that feeling in my gut that burns deep.

It ends with us. All of us. Not just advocates, but everyone who is passionate about ending. That includes Big Pharma and device manufacturers and government. Us. There is no longer a “them”.

And in order for it to end with us, it has to begin with us.

Get ready, because…

It ends with us.

Medtronic Diabetes and Bayer HealthCare paid for my travel expenses and meals in connection with the Third Diabetes Advocate Forum where we discussed online and offline diabetes advocacy as well as Medtronic products and therapies such as MiniMed 530G with Enlite. I have received no compensation from either Medtronic or Bayer in exchange for writing this post and the opinions I am sharing are my own.