When social media giant Facebook brought hundreds of people together in Chicago last month for their first-ever event exploring how FB groups are making a difference worldwide, our Diabetes Community was in the house!

Yep, three administrators of the powerful CGM in the Cloud group were invited to attend along with 300+ others who manage some of the most influential groups on Facebook. They were there to talk about best practices for these online channels, and also got to personally meet Facebook founder Mark Zuckerberg and hear how he's changed the platform's mission from simply connecting old high school friends to something far more aspirational: giving people tools to change the world for the better.

"To give people the power to build community and bring the world closer together."
"To give people the power to build community and bring the world closer together."
"To give people the power to build community and bring the world closer together."
"To give people the power to build community and bring the world closer together."

If you're not familiar with CGM In The Cloud, it began in April 2014 with just a small handful of diabetes technology do-it-yourselfers hacking into continuous glucose monitors to share data in ways that the D-industry hadn't yet brought to market. They published how-to guides and offered 24/7 help to others wanting to build their own D-tools. Today, the group is 23,000+ members strong and embodies the incredible #WeAreNotWaiting movement of grassroots patient innovation.

Three group administrators attended the FB event in Chicago -- Laurie Schwartz from Colorado who has T1D herself, and two D-parents: Weston Nordgren from California, and Kate Farnsworth from Canada.

Here's what Wes and Kate tell us about the FB event and their takeaways for our community.

 

Weston Nordgren

{Wes is a tech-savvy D-Dad (father of five) who teamed up with his wife of 32 years to advocate for the Nightscout Project and open source solutions for improved T1D Care.}

One day a few weeks before CGM in the Cloud marked its third anniversary in April 2017, I received a message from one of our group’s founders that indicated Facebook was going to hold their very first ‘Facebook Communities Summit’ and that they were looking for Admins that thought their group was doing extraordinary things.

What an honor! I sent in an essay about our group, and then waited… before long, I received an email stating that a small group of Facebook executives would like to hear more about our group and asked if they could call me the following day for a conference call to allow for further explanation of how our community was doing extraordinary things.  OK… No pressure!

At 10 a.m. the next morning, I was on a live conference call with a group of Facebook execs. As they introduced themselves, it dawned on me that I was in a pitch meeting (or what I imagined a pitch meeting to be). Here we were in a ‘virtual room,’ with high-powered Silicon Valley innovators on one side and me, the volunteer dude from a group that they had previously not heard a thing about on the other side. I told them our community’s backstory and the explosive growth we’ve seen, our successes and challenges, our achievements and the impact we’ve had on people in the Diabetes Community.

Silence.

Then suddenly, these Facebook execs fired question after question at me.

We ended with them thanking me for all the group’s done, followed by the “don’t call us, we’ll call you’ phraseology typical in such a situation.

Three days passed, and then I received a call that we had been selected as one of 130 Facebook communities out of 630,000,000 communities on Facebook! They informed me that once we arrived at the Summit venue in Chicago, they would take care of all our expenses for the three-day event.

It turns out, too, that we were being considered for one of six candidates to join a three-person panel with Facebook founder Mark Zuckerberg, but CGM in the Cloud didn’t make the final three. I was disappointed, sure, but that didn’t diminish one iota what our community has done or the value of each person working toward a common goal in our village. We would attend the conference grateful for the opportunity and massively proud of the community that we would be representing.

Secrecy and Anticipation

For our group, attending a conference usually means preparing and presenting on the Nightscout and the ‘CGM in the Cloud’ community. But this time, we were told to come prepared to absorb, that everything we would need would be provided for us, and that all we needed to do was to get to the hotel.

With what I can only call great enthusiasm, ‘CGM in the Cloud’ Admin Laurie Schwartz, Moderator Kate Farnsworth, and myself set out to find out just what this was all about. Activity on the secret group that Facebook created for the 300 who would attend increased and grew proportionately with our uncertainty and enthusiasm for this new upcoming event. We were told where we would be staying, but that we would be taken by bus each morning to different undisclosed location for the actual Summit activities. I guess in the age of social media and ‘flash mobs,’ any leaked information could easily overrun an intimate venue created for just 300 of the nearly two billion Facebook users.

Day One - FB Praise

As we entered the very large downtown Chicago Hilton on Wednesday, there were well-identified Facebook employees about every 50 feet in every direction on the main floor of the historic hotel. Each Facebook employee had a sign that indicated what we needed to do and the direction we needed to go. 

Roughly 130 groups were presenting, and there were large wall-sized canvases covering two walls that had multiple local artists painting the embodiment of each group at the Summit. Another featured a huge illustration of North America with a heart painted next to each of the places we call home. And what became the night’s biggest hit was Willow Wonka, Laurie Schwartz’s Diabetes Alert Dog.

What became clear was that this wasn’t the type of conference we were used to attending. No, this was Facebook preparing to tell us that they had not realized what we were all doing to change the world. And that they were, in fact, changing their entire mission statement -- the entire focus of company -- to support the very thing that we had collectively built in spite of them. This was Facebook realizing that together, with the right tools, we could initiate worldwide change from the bottom up, one person / one group at a time. They were telling us something that we endlessly say in our group, affirming that yes, indeed: “It takes a village!”

Day Two - Other Communities, Bigger Groups

The whole event was both addicting and humbling, and we felt that in full force on Thursday.

We were among groups managing as many as 350 sub-groups, some with one million members or more. Their stories were heartfelt, their work was passion-driven, and no matter how inconsequential the group might appear from the outside, the sense of community that they had created among their members across the globe was genuine and their stories of pulling together and helping each other to achieve a common good, was down right heart-warming. As I internalized all of these people working with millions more for the greater good, I realized I had picked the wrong day to forget a handkerchief… the wrong day indeed.

It was amazing to see and hear a live keynote speech by Mark Zuckerberg, the billionaire himself who is the face behind Facebook. His talk was informative, relatable, and course-correcting for Facebook as an enterprise. The BIG take-away from his keynote was that they were going to be giving us tools to manage LARGE Facebook groups and that we would (in the not too distant future) be able to knit our many subgroups back into the main group to become one large community again.

During the day, seminars focused on how we could continue building a strong and ever-expanding vibrant community.  Each high-powered seminar was led by at least one Facebook executive and one industry leader specializing in the topic at hand. For example: in one seminar, a Facebook executive said, “Look at what you have been able to create without our support or tools; think of what you will be able to achieve in your groups with our help, support, and tools to manage large groups and communities." Right!

Day Three - Psyched for the Future

On Friday, the final day, we ended up at the same conference destination in the heart of Chicago, but long gone were the metal detectors and bomb-sniffing dogs – apparently, we’d reached a level of trust. Or more likely, it was due to the billionaire factor and therefore the press army being gone.

There was much to learn, and on Friday there was much to contemplate for without the fanfare of the proceeding day. The ‘wow factor’ had been replaced with ‘Well, how are you going to implement all of this?’ As a businessman, I can tell you that the caliber of the seminars was top-notch and surely cost thousands of dollars per employee for this type of training and information.

As Kate, Laurie and I met again for lunch (we were all separated by color-coding for each seminar), we were much more pensive than the day prior. We reviewed the facts that we had started out as a technical support group for Nightscout and had over the years broken off into sub-groups as our worldwide community grew in its need for specialized topic support.

As to moving forward, the answer will be very similar to how we have always worked as a group and as a community. It’s about Paying It Forward and helping each other, one person at a time in a way that has a ripple effect across our D-Community.

How will we do it?  We’ll do it together as a group, as a community, and as a… village!

As told to us in an old proverb, “Many hands make light work.” We came for the technology, but we stay for the camaraderie. Onward, our vibrant, bustling, super community group awaits!

 

Kate Farnsworth

{Kate is a mother of 4 daughters, the oldest of whom lives with T1D. She's used her skills as a digital media designer and IT specialist to work on tech solutions and advocate for the Canadian Diabetes community since 2012.}

It was an incredible honor to be invited to participate in the first-ever FB Communities Summit with Wes and Laurie. As noted, 300 power admins coming from varied sectors of the Facebook community were invited from all over the world. The excitement built in the days leading up to the event. One by one, the participants made their way to Chicago, there was mystery in the details of what we would be doing, there was pride from each of us, we were there to represent our groups, but there was something more. There was a diverse cross-section of the Facebook population all coming together for something important. 

I thought I was going to spread the word about what amazing work the CGM in the Cloud group was doing -- how we were changing lives and making life with diabetes better (and I did manage to do a lot of that!). What I was not prepared for was how important each of these groups were to the people in them -- the amazing passion and devotion no matter which group you were speaking to. The “Gay Fathers” had me in tears when they spoke of the challenges they have faced. The “Momma Dragons” who fiercly protect their LGBTQ+ children made my heart break. It was here that I realized that the value of our CGM in the Cloud group was this amazing community that we have created and not just the tech support that we provide each day. 

In the workshops Facebook provided us on how to better manage our communities -- from “Confronting Conflict” to “Creating Shared Purpose" -- I learned so much and am still processing a lot of what they shared. The takeaway was that no matter how amazing our group is, we can always do things to make it better and to support our members more effectively. 

When I first came to the CGMITC group, it changed my life. I found Nightscout. I found a way to give my daughter more freedom while I had her back. I poured myself into helping as many people as possible to get the same technology. In the early days everyone was so grateful. There were date nights for the first time and first sleepovers and tears and lives were changing on a daily basis. We were providing life rafts for those that desperately needed them. 

As the years have gone on and the commercial solutions have improved, our life rafts aren’t needed in quite the same way. We have managed to gather some of the most motivated and innovative people touched by diabetes in one place. That is incredibly powerful. It has inspired me to think about our community in a different way. How can we, 12,000 strong change the world? I think we have already done some great work towards that. What is next? How can we build our community even further so that we can help more families? Together we can push the limits and achieve the impossible.

When I heard Mark Zuckerberg explaining how he's changing the Facebook mission to "give people the power to build community and bring the world closer together," my hope peaked that with the tools he has given us, we can bring the Diabetes World closer together and build an even more amazing community. The future possibilities are limitless!

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.