HackDiabetes25 – Vancouver

This past weekend I spent three days at the Sheraton Hotel in Richmond with about 40 people from literally all over the world—developers, endocrinologists, advocates, and people living with Type 1 diabetes who’ve built the technology that not only keeps us alive, but thrive.

In the beginning, I felt like a fish out of water amongst the crowd being that guy with very small feet in very big shoes.

You see, I’m not a real developer. I can hack some code together when I need to (ala Lightroom and the FrameTV), but I barely know Git and still need SourceTree to make sense of the mechanics of version control. I felt like everyone else in that room was writing actual code, debugging algorithms, pushing commits, talking about pull requests like it was second nature. A cadre of developers across Loop, Trio, AndroidAPS, Nightscout were sitting in that hotel conference room.

The We Are Not Waiting Movement

I’ve been involved in the #WeAreNotWaiting community since 2018 helping those in the Bay Area build the software. For those who don’t know, this is a grassroots movement of people with Type 1 diabetes and the people who love us who got tired of waiting for medical device companies and the FDA to give us the technology we needed to thrive. So, we built it ourselves.

Do it yourself (DIY) closed-loop systems—Loop, Trio, and AndroidAPS — use algorithms to automatically adjust insulin delivery based on continuous glucose monitor readings. Think of it as a software defined organ. A pancreas that can get fixes and updates. Compare that to my old Medtronic insulin pump that had bugs I’d have to live with for four years until insurance would purchase the new model. This is the difference between being stuck with hardware limitations and having a pancreas that gets better over time.

This technology helps me ride my motorcycle. I can glance down at my phone and see my blood glucose while I’m on the bike and how the system is keeping me in range. It helps me sleep at night. My highs are lower, my lows are higher. No more falling off the dark diabetes deep end.

Diabetes is a highly data-driven condition—blood glucose readings every five minutes, insulin doses tracked to the hundredth of a unit, carb counts, exercise, stress, sleep, all of it feeding into decisions about staying alive. Technology is perfect for this. Commercial systems are catching up now — some of them, but for years, the only way to get this level of control was to build it yourself. This community made that possible.

It’s the difference between waking up six times a night to manually correct blood sugars and sleeping through the night. It’s the difference between stopping every hour on a motorcycle ride to check my CGM (or worse, staple and bleed out of my finger) and actually enjoying the ride. It’s the difference between an A1C in the 7s or 8s and an A1C under 6.5—or with some modest work, under 6.

Getting Out of My Own Way

I spent the weekend updating the Nightscout Foundation website (https://www.nightscoutfoundation.org/). It hadn’t been touched in years. The team was focused on building new things.

I found old pages and old images. I found a few pages that didn’t work anymore. I removed cruft, rewrote copy, learned people’s stories, tried to capture how the community had evolved. It felt like cleaning out an old house and realizing how much had changed. Loop is relatively easy to build now and is accessible to more people. The focus has shifted—now it’s about innovating on algorithms, building community, expanding reach, and pushing things forward alongside people.

I came to realize the work I was doing had real value. Getting the website up to date attracts new people to try the tech and align to the shared mission: advocates, donors, and change makers. I just had to allow mysef to get out of my own way. I said hello to people and learned not to be afraid to jump in on what I could actually do (and maybe a few things to stretch me).

The Joy of Hacking Together

Hacking was fun. It was awesome being on a team that cheered you on, regardless of your role.

The website was built in Squarespace, and at 11 PM on Saturday night Squarespace pushed me to update the site to their new “Fluid” editor. Of course it broke most of our pages. I laughed—I’d learned that lesson so many times over my career. Never update production at 11 PM on Saturday night with a Sunday morning launch. But there I was, doing it anyway, with a room full of people who understood exactly why I was laughing and kept cheering me on as I fixed page after page.

That’s the thing about this community. Everyone gets it. Everyone’s been there. Everyone’s working something at midnight that they wanted to get done. It was hacking at full speed. I mean we got to go to The REAL CANADIAN SUPERSTORE to power the hack on Coke Zero, Cheezies, Coffee Crisp and other maple leaf goodies!

Finding an awesome local connection far from home

I got to meet one of the lead Stanford endocrinologists who got me on Trio after two failed attempts.

Here’s the thing about Trio and AndroidAPS: they’re movement-based systems. Loop is carb-based—you eat carbs, you tell Loop how many, it gives you insulin to match, much like I had been trained for decades. Trio and AndroidAPS sense the movement of your blood glucose and dose insulin to match that movement much like your pancraeas works. I couldn’t learn that dance the first two times I tried. But this endocrinologist sat down with me and took the time to really help me understand how the algorithm worked — not just what buttons to push, but why it does what it does.

The game changer? He had a database he could pull from of different body types and settings that worked for them. In theory, rather than relying on a simple mathematical formula, he could look at what had actually worked for people similar to me and start there. That made all the difference.

I love the live features in Trio. I love UAM (unannounced meals) — the idea that the algorithm can see you’re eating and respond without you having to pull out your phone and log carbs. I wanted it to work. And now hopefully I can get there.

A moment for Canada

Every time I cross the border, I try to focus on the fact that I’m in Canada, an independent, sovereign nation with it’s own history, traditions, and culture. This trip north earlier in the week R and I went to the Rememberance Day ceremonies at Victory Square. It was a moment to learn about Canada’s role global conflicts, both alongside the Americans and Europeans and in their own actions – from their perspective.

I got to learn what the Cenotaph was and why Canadians wear red and black poppies in November. I learned a bit how Canadians assemble their armed forces and reminded of the interaction I’d had with an Australian soldier many years ago lamenting, “War is Hell.” There’s a focus here on “Lest We Forget” to remind us to not forget the lessons of the past. It was a moment for me to hear O Canada across the crowd.

About halfway through the day I was struggling to build Trio. Someone mentioned pointed me to the person who was writing the documetation for that very process. She helped me immensely and our conversation quickly shifted to the week’s adventures in Canada as she was local to the area. I recounted my time in Victory Square and could see her interest, engagement, and emotion. I learned that she came from a military family and how important Rememberance Day is to her family. It was a tender moment that touched us both and a reminder that we’re all connnected in so many ways as a global people.

Full of Awe

Later in the day, I sat between a fellow from Hobart (that’s in Tasmania, off the coast of Australia) and a guy from Sweden. People came from all over the world for this. Literally all over the world. Wow.

Sitting in that room with those people—the ones who’ve written the code that keeps me thriving, the ones who’ve fought battles to make this technology open to share, the ones who’ve stayed up late debugging someone’s build over Discord, the ones who’ve shared their own diabetes stories to make the rest of us feel less alone — I kept thinking about how lucky I am.

The president of the board put out a call: what does #WeAreNotWaiting look like next?

We could reach globally where pumps and glucose monitors are not ubiquitous. Linking in different kinds of data — movement from smart watches to speed or slow insulin delivery automatically. Develop better algorithms that use past data to configure insulin dosing. And of course in today’s world, every pancreas needs AI.

This future is being built in hotel conference rooms by people who couldn’t wait for permission.

There’s a Place for You Here

I think often about applying to join a board for an organization I care about. Now that I’m older and more tenured (lol), I want to think about what that is. This weekend reminded me that showing up matters, even when you feel inadequate.

Here’s my challenge from this weekend: it’s about being willing to help, whatever your skills are. Not everyone needs to be a developer. There is work for all of us.

• Website updates.
• Social media posts.
• Documentation and testing.
• Building out a planning calendar.

If you want to help, there is a place for you here. You don’t have to be a developer. You just have to show up. The #WeAreNotWaiting movement didn’t wait for permission. It didn’t wait for the FDA. It didn’t wait for Medtronic or Dexcom or Tandem to give us what we needed. It built the future we wanted to live in. I’m fortunate get to live in that future every single day.

To everyone who was at HackDiabetes25 Vancouver — thank you for the code, the community, and most of all for not waiting.