Above and “Beyond”: These two communities are helping over 54,000 people impacted by diabetes to live well, now
Featured in this Story of Awesome: Beyond Type 1
Launched May 2016
Beyond Type 1 is a free, public community for people impacted by Type 1 diabetes that allows people impacted by TD1 to ask questions, share successes, and vent in a safe and respectful space.
Its sister site, Beyond Type 2 is a free, private community for those impacted by Type 2 diabetes, where they can share their stories, connect one another, and find resources on topics from daily management to mental health.
The Spark: Founded in 2015, Beyond Type 1 began as a nonprofit organization with one goal in mind: Changing what it means to live with diabetes. In 2021, the team expanded with another Mighty Network, Beyond Type 2, to give the same resources to those affected by Type 2 diabetes.
Dana & Tiana’s Mighty Moment: “Something I’ve learned from working with Beyond Type1 is the ways in which the experience of living with Type 1 diabetes is shared, and the ways that everybody’s experience is different. And that’s something we spend a lot of time working with within our community: Fostering a space that teaches people that lesson.”
Both Dana Howe and Tiana Cooks live with Type 1 diabetes. And they’re both passionate about fostering a community for people living with or impacted by diabetes, and helping those people live well, now.
And with Beyond Type 1, they’ve done just that.
As a nonprofit organization, Beyond Type 1 is dedicated to funding advocacy, diabetes education, and cure research. But with their community program—hosted via Mighty Pro—the company has been able to reach out directly to those affected by diabetes, and offer them a sense of support in a dedicated, safe space.
We chatted with Dana—who formerly worked as Beyond Type 1’s Chief of Staff and Communications Lead—and Tiana—Beyond Type 1’s Community Manager—about the impact of the Beyond Type 1 community, their most recent venture, Beyond Type 2, and what it’s like managing a free community of over 50,000 people. Hint: It takes teamwork to make the dream work.
How did Beyond Type 1 and Beyond Type 2 come about?
Dana: Beyond Type 1 launched in 2015 to fill a gap in the diabetes patient advocacy organization landscape. We help people live well now, whether it’s through connecting with others or practical programs that might meet an immediate need, like insulin affordability. We do a program for college scholarships, we connect people with pen pals if they’re not online. It’s really focused on the question of, “How can we make you feel more connected, but also solve some practical problems?”
So our roots as an organization started with Type 1, but we quickly realized that gap about helping people live well now, it’s there for people with Type 2 diabetes as well. So earlier this year, we launched Beyond Type 2, and we’re working to build our offerings and resources there.
Beyond Type 1 was established way back in 2016. How did you approach creating the space for Beyond Type 2?
Dana: We’ve been running Beyond Type 2 as a publishing platform on social media for two years now. So, we had already learned a little bit about what works for a Type 2 community, and we have staff dedicated on the Type 2 side. We took the blueprint of the Beyond Type 1 network and worked with that part of our team to say, “What here makes sense for the Type 2 audience, and what do we need to change?”
“We aren’t just trying to grow a community. We’re trying to change the way people are thinking about diagnosis.”
One big thing we decided to change was that our Beyond Type 2 app is a private network. And our Beyond Type 1 app is not. That’s because we’re going into this with the intention of trying to create a safe space to talk about Type 2 diabetes, which we know is even more sensitive than talking about Type 1. There’s a lot more stigma. It’s really different. But we aren’t just trying to grow a community. We’re trying to change the way people are thinking about diagnosis.
Both of these communities are just one part of the overall work your nonprofit does. How do they fit in with everything else your organization is doing?
Dana: A cool throughline that we’ve created from our community to other parts of our business is using the polls and questions feature to do some really quick temp checking on community issues or ideas before meetings with another non-profit, where we’re going to talk about game planning for X.
Let’s say we’re game planning for what content we’re going to build together on going back to school with a new Type 1 diagnosis. We will sometimes strategically say, “What’s a couple of quick polls questions we could pop up in the app to help inform that?” We’re not doing a big, heavy lift, market research survey. We are just going to get a temperature check and get some cool comments and input to go help inform that discussion that we’re about to have in a business meeting session with content, talking content strategy for our website.
But it’s been a really, really cool way for us to direct our content strategy, but also to reinforce the power of being connected to the community in this way. It has really wowed some of our partners for us to be able to say, well, we just popped up a poll and we got 400 responses, and 80% of people said that this is their biggest challenge this year going back to school. And just having access to that kind of groupthink is so powerful. It makes us better at the other things we do, too.
Your community is pretty sizable — you’ve got over 50,000 people in Beyond Type 1 and nearly 500 people in Beyond Type 2. How do you manage that many people?
Tiana: When it comes to moderating, that number does make it a little bit more tricky, because there’s more that we have to look out for. But we have our guidelines. And if anything violates our guidelines, we usually do get reports. And that’s just because we have a few people on the app that are very dedicated to reporting stuff when they see it, flagging things.
Dana: Our number one featured post is some guidelines for acceptable posts, but also guidelines for when to flag something. We’ve really leaned on that to be able to always say, “Hey, if you see anything, please flag it.” And we do our best to make those guidelines super prominent and really clear, and we keep adding to it. So, for example, if we just keep having situations come up around politics, we’ll add a bullet point [in the guidelines] that makes it really clear that we’re not talking about that. That’s been super helpful.
What has been the biggest surprise since you launched your community?
Tiana: I think the biggest surprise has been the organic growth and the organic conversations that have been happening. It’s been really cool just to watch everybody interact with one another. And it’s been really hands-off for the most part, on our end, even for the Beyond Type 2 app which we launched [much more recently]. Two weeks in, people were already in there, communicating with each other, and being like, “Wow, I really needed this space. I really needed a platform to come and connect with other people with Type 2.”
Dana: Another lovely thing that has come out of it, has been the way that people are connecting across identities, certainly in the Beyond Type 1 app. Tiana and I were looking at examples before this, and we were talking about one where a teenager posted their perspective and shared the specific challenges of being a teenager withType 1 diabetes. And a bunch of the comments on that post were from parents of four and five years old, who are like, “Wow. I have been so concerned about the future of my child’s diabetes because I know it gets more complicated when you’re a teenager, and that freedom, navigating care. It’s a really challenging time.”
“Watching people learn from each other—not just teens to teens and parents to parents, but across identities—has been super powerful.”
Seeing that, watching people learn from each other—not just teens to teens and parents to parents, but across identities—has been super powerful. Especially because I don’t think there’s a lot of places IRL where those kinds of connections can happen.
What’s next for Beyond Type 1 and Beyond Type 2?
Dana: We have lots of plans as an organization. On the community front, our focus for a while here is going to be on the Beyond Type 2 community and trying to grow the Beyond Type 2 community. We as an organization are trying to be part of a sea change in how people with Type 2 diabetes think about their diagnosis. We are trying to help create a shared vocabulary, and help people understand the power of connecting with other people with type 2 diabetes. And we think that our private community can be a part of that.
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Beyond Type 1 and Beyond Type 2 use Mighty Pro to run their communities. With Mighty Pro, you bring your brand’s community, content, events & conferences, videos & live streaming, online courses, memberships, and payments together into beautifully branded native apps that you own and control.