Going Beyond with New Diabetes Nonprofit CEO Thom Scher

Talking with Beyond Type 1 CEO Thom Scher

DM) First, congrats on the new role, Thom! Can you start by sharing your personal connection to diabetes?

TS) When I came into all of this with Beyond Type 1, I didn’t expect to find myself in the diabetes space. I didn’t really know anyone impacted with type 1, though I do have a couple family members with type 2 as tends to be the case in the world these days.

So for a long time, my answer to the question about having a personal connection was, ‘I don’t have one.’ But someone told me a couple months back that I’d better not ever tell anyone that I don’t have a personal diabetes connection, because I do now. I laughed and it’s so true. These days, I have incredible personal connections to diabetes — people who I’m privileged to work with, who I find inspiring from friends, loved ones, people who I have spent years now getting to know. It’s so broad, but it is not lost on me that I came from outside this diabetes space.

So how exactly did you end up at Beyond Type 1?

Just out of Stanford, where I had studied political science, I’d started my own PR company in the fashion industry space. We did a lot of work with companies outside the fashion space, too, but I wanted to partner with those inside the fashion space. There was a lot of partnership-building and I was young and having a lot of fun working in the fashion industry. And to be honest, didn’t know a lot about what I was doing when I started. I really enjoyed it, but at a certain point wanted to be with a team and in-house somewhere that I could grow into a role more. I was fortunate enough to wind up at WikiHow, which at the time was growing pretty rapidly. I was able to get in early on that and we built a large division internationally, millions of assets and building a brand. I was there for a decent number of years and never planned to go into the diabetes or nonprofit space.

I lived both in the U.S. and abroad during that time and we were able to build out a very large team on brand efforts, but I began to have an itch to try something else. I knew I wanted to do something different, to apply my skills to something new. I just didn’t know what that was. Then one day, I ran into (BT1 founder) Sarah Lucas at a Starbucks in Menlo Park… and the rest is history.

It was a chance encounter at a Starbucks…?

Yes, it’s a fun story. We bumped into each other there. I had known Sarah, because her daughter Mary had interned for me during the days I worked in the fashion industry. We sat down and had this great conversation, where I told her I was looking at other tech jobs and she was just trying to get this new nonprofit focused on type 1 diabetes off the ground. We gave each other a hug and parted ways. Then about three days later, she called me and said the four co-founders were all on board to ask if I’d leave my job in tech to come work for her in operations at BT1… initially for just three months. I said ‘yes’ on that Saturday night and told her I wanted to talk about it more on Sunday morning — and if you’ve ever met Sarah you know how persuasive she is, so I gave my notice and started that day. And 10 weeks into it, the board asked if I could stay, and here we are three-and-a-half years later.

I remember thinking at the time, ‘What would I think of people who might be interested in the operations side of a diabetes organization?’ I never thought that’d be me. But let me say this: I am incredibly grateful and humbled and inspired by the fact it ended up being me.

We were of course concerned on hearing of Sarah’s health issues late last year… any updates on that?

I’d rather not say too much on that out of respect for Sarah and her family. She and her daughter Mary have been pretty open on social media about Sarah having a health issue in early Fall, so that information is public.

What I can say is we’re really fortunate to have Sarah remaining involved as part of the board of Beyond Type 1. Much like what JDRF is doing transitioning of Derek Rapp out of his role as CEO this year to a board seat. I’m fortunate enough to have been involved from the start, working with Sarah and the board since our very beginnings. That makes for an easier transition. I am excited that Sarah will continue to be deeply and meaningfully involved; she’s been a key component in building the organization and we’re all so grateful for the work done, as I hope the entire Diabetes Community is.

How big is your team at Beyond Type 1 now?

We’re at about 12 full-time people now, plus several part-time people, contractors and outside teams. We’re still very lean given everything we have going on.

Yes, besides your own online reporting and social media content, BT1 seems to have its hands in everything from fundraising on access, to babysitting services, Jerry The Bear, national running programs, and grief support for families. How is it possible to sustain that explosive growth?

I do think the phrase ‘explosive growth’ is accurate. We have grown tremendously and exponentially, both in the U.S. and abroad. I love that. It’s been very meaningful overall. From the staff standpoint, we are very fortunate to have grown up in the digital era. We started with an Instagram feed before we even had a website, so we were ‘digital first.’ That’s kept us from having to build brick-and-mortar locations, and allowed us to operate more efficiently across the world.

I’m also very fortunate to have our councils, groups of people who are also volunteers each with their own specific projects that they’re passionate about – our leadership council, family council, science advisory council, and global ambassador council. Each of those four give us a reach that extends beyond full-time staff and allows us to leverage what each provides. We also have so many volunteers who give their time and expertise. Without them, Beyond Type 1 wouldn’t be able to do the work we do.

Do you think that reflects the overall evolution we’ve seen in the Diabetes Online Community (DOC), i.e. more collaborations and things moving from completely grassroots to more established programs?

Yes, I do think so… I like to think we’ve been involved with and helped push that DOC evolution in some ways, and we’re seeing a recognition from health professionals about the importance of peer support communities and networks. It’s so interesting to see that evolution, because it’s absolutely changed how these online communities interact. It’s not lost on me that all of the work we’ve done at Beyond Type 1 stands on the shoulders of the work done in the DOC before us. Those are all components of what is being done today.

And has that helped you achieve BT1’s incredible audience reach?

Yes, we’ve benefited from that history and that’s allowed us to grow these social channels to what’s now 2 million strong, plus approximately 1 million visitors monthly across web platforms, 35K members in the app, and Google Analytics lists us as curently having presence in 179 countries.

It’s exciting and helps us be able to collaborate and find partners and raise the profiles of their advocacy more effectively. For example, I was very excited to promote JDRF’s #Coverage2Control petition on better healthcare after the recent Texas court ruling – that’s a good example of us being able to partner with another org, because we have the reach to do that. It was the same thing in partnering with DiaTribe, Tidepool, College Diabetes Network, Children with Diabetes and DiabetesSisters on the SGLT-2 inhibitor survey recently for patient involvement. The point is that we’re all a part of the same community and can work together.

I think to myself, ‘Beyond Type 1 didn’t used to exist. Now that it does and we have this audience, we can help direct their efforts to these things.’ That gives us a power that I don’t think existed in the space the same way, and I am really excited to see what more we can acheive with that.

One of the biggest moves was when BT1 took over TuDiabetes (and Spanish-language EstuDiabetes) in June 2017 after the Diabetes Hands Foundation closed. How has that transition been from your POV?

Many online communities are in a state of vibrant growth, and that’s just as exciting. When we brought TuDiabetes/ EstuDiabetes in house, we had no idea whether it would grow. Or whether we were just taking on a property in order to continue it and keep in a stable state. We took those properties on under intense pressure in a little over a week, and the primary goal at that moment was to not let these sites go dark. They needed to be up and alive. We were able to make that happen and then we just sat on it, and watched and learned. We did the redesign and gave it a fresh coat of paint several months later, and that led to a year straight of week-over-week growth.

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That’s tremendously exciting to me. We’re bringing new people into these communities, which were ripe 10 years ago and they’re still ripe today. They get a design refresh, and then we can redirect people from Beyond Type 1 to individual sites and platforms that fit best for them. That’s the whole key — helping people finding what they need, whether it’s TuDiabetes or the Beyond Type 1 app, to Glu, diaTribe, CWD, DiabetesMine or pick your thing. I love seeing that, to know that all of these platforms were built on the shoulders of succeeding.

You also have a pretty steady stream of content and articles being shared, right?

Yes, from the very start, we haven’t shied away from the tough topics. It’s notable to me that we set out with a mental health category from the very beginning. Those issues of depression, diabulimia and mental health are tough, but we knew they needed to be there online for people to find. We didn’t shy away from those, just like not avoiding questions on marijuana use or questions about devices and sex. That’s been a really important aspect that I think people appreciated about our content in those early days.

I like that we always ask, ‘What can we do to make sure people have the best content and programs to live their best lives?’ in deciding what to offer. And if someone else is already doing it, well, how can we amplify what they’re doing? I look for example at our partnership with Asha Brown and We Are Diabetes in eating disorders. We’re so honored to give them a grant and be a partner in that effort, because we don’t need to reinvent the wheel. Let’s amplify her work, and that speaks to our overall approach.

How would you describe the incredible awareness Beyond Type 1 has achieved in just a few short years?

We are still a young company and we set out very early on to make sure people knew we were out there. But I’d be remiss to not say that even a year-and-a-half ago (in 2017), we sat in conference rooms and heard people say, ‘What’s that?’ when asked if they knew of us. We’ve really experienced growth and a saturation of awareness in the past year and a half. Our programs are reaching more audiences now and I’m really happy to see that growth, and again I’m humbled by all the work that came before us.

In my mind, SixUntilMe, DiabetesMine and all of the DOC sites I discovered when I first started were all guiding lights in terms of what’s working and what do we need to be aware of as we build Beyond Type 1.

We still do have work to do in making sure that all of our programs cross-pollinate, and just making sure people know what else exists out there in the diabetes space online.

The fact that Beyond Type 1 is publicly supported by celebrities Nick Jonas, Victor Garber and Sam Talbot hasn’t hurt either, we’d bet…

(Laughs). Yes, we have been fortunate enough to have a number of highly influential people involved, whether it be celebrities or business luminaries. That’s really important. We’ve benefited from people like Bambi Blyth, who’s a supermodel known worldwide and lives with type 1, get covered in international magazine Harper’s Bazaar talking about her diabetes and Beyond Type 1 and why this is all important to her, or (actor) Victor Garber telling his story and being so highly engaged with us.

And for Nick and Sam, who are original co-founders, they’re both meaningfully engaged board members and far from involved in just name only. Look at Sam helping us work with Panera Bread on an incredible campaign that went viral in just 36 hours, and that idea came from him and Panera. Those influencers are a big part of making those types of things happen. They are so busy, but really inspiring. It’s so much more than what you usually see, with celebrities being involved as just brand ambassadors or a product spokesperson.

Nick, for example, is really engaged in long-term vision and behind-the-scenes in ways that people forget, and his vision has certainly helped us take programs in different directions. All of this raises awareness and helps explain what type 1 and type 2 diabetes are, feeding into better understanding in general for the work we’re all doing on diabetes.

We see tremendous opportunity to bring in more of a celebrity presence in type 2 as well, and we’re definitely using a similar model with our new Beyond Type 2 platform. Stay tuned for more coming soon!

OK, let’s talk about the new Beyond Type 2 program…

This was on our roadmap from the very early days. We believed the same things that made Beyond Type 1 powerful could make Beyond Type 2 powerful. Obviously, the four co-founders all have a personal connection to T1, so that is where we started and built from. What we saw as more people came to us, were more living with type 2 – especially after we were able to step in and continue TuDiabetes. Watching how T1s and T2s interacted with each other in the same ecosystem on that re-designed forum was really a watershed moment for our leadership. It was also a proof-of-concept, for lack of better words.

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Word-for-word from the press release is that ‘We felt like there was an opportunity to bring the magic of Beyond Type 1 to Beyond Type 2, and enhance their lives in the same ways.’ It has been very important for us to do this right, to make sure it’s highly inclusive, has the right resources, and that we were very cautious in addressing the needs of people with type 2 diabetes. We hired a CDE and also a project manager, T’ara Smith who lives with type 2, to work on the back-end to establish a content strategy we could launch with and then build from there. The approach is the same we took with Beyond Type 1, in launching with something that meets a handful of needs and then listen to the community as it grows to go from there.

Any thoughts on addressing stigma, often associated with type 2 diabetes in particular?

Look, I don’t have a silver bullet here, and it’s an issue that has been batted about in the DOC for more than a decade. Our hope is to apply what we’ve done to make a difference for type 2. I think we can do a lot of good with social media — things like easy Instagram campaigns where people can share pictures or stories, and present opportunities to bring people in who otherwise might not have a reason to be in the space before. We’ve already been hearing that, from people who say they’d been diagnosed a few years earlier and had never told anyone they were diagnosed until seeing this Instagram campaign. I think there’s an audience not yet at all engaged, because there hasn’t been something to bring them in easily with everyday content that speaks to them. Our hope is to change that, and we’re putting our hat in the ring on trying.

Why launch a new website overall?

It was important to us not to lump Beyond Type 2 into Beyond Type 1, because the former has become a home for people with T1D. So often people with T1D describe how hard it can be to constantly battle stigma and questions of ‘the good or bad kind’ of diabetes… There’s so much emotion and also misinformation and misunderstanding out there, that we didn’t want to lose the fact that we are a home for those with type 1 and our main programs are geared towards type 1.

We’re fortunate enough to be able to build two different sites, serving both communities – but when opportunities to find synergy arise and we can direct energy to the same cause or issue, we can rally both together. That has the potential to be incredibly powerful. I think of Beyond Type 1 as a brand, and a parent organization with brands within it, such as Beyond Type 2.

Any examples you can give as to T1 and T2 efforts that may overlap?

Yes, for example, in 2019 you’ll see us try to tackle insulin and medication affordability more directly with both communities. That’s an area where both communities ought to be passionate, because it impacts the entire Diabetes Community.

You also separated the sponsors and partnerships for the two sites, correct?

Yes, we did that intentionally and very carefully. The money raised from Beyond Type 1 didn’t go to building or operating Beyond Type 2. That’s fully funded through corporate partners… it’s very important to me that we’re not taking someone’s donation to Beyond Type 1 through another program, to not have T1D-dedicated funds used for building out Beyond Type 2. It’s an important distinction, so I wanted to have a coalition of partners that would allow us to create the new platform without impacting everyday donors who are generous and allow our programs to run.

How do you tackle fundraising overall?

We don’t talk about our fundraising all that much, and it’s one of the things that I think makes Beyond Type 1 great. We’re not out there constantly fundraising from our online audiences, and it’s not that heavy a focus on our website. In the early days, it was a constant problem because people didn’t realize we were an actual 501c(3) charity they could donate to – we look like a lifestyle brand and run like a tech startup. These days, it’s important to me that we focus on being a part of the community first, with fundraising after that. It’s not where we start. I hope people get involved with us because it’s helping them or a loved one, and if that turns into them being a donor, fantastic. If it doesn’t for any number of reasons, that’s fine too.

But you do rely on corporate sponsors and partners, especially those in the diabetes industry and Pharma?

This is a challenge for all nonprofits in this space, especially when it comes to insulin manufacturers. Insulin affordability is a complicated topic with many players in the system, from getting to how insulin is made to what people pay at the pharmacy checkout. There are a lot of factors that go into that. We at Beyond Type 1 are committed to content that discusses this, and to pragmatic ways we can help move the needle on this.

Partnering with industry is a key way that a lot of nonprofits survive. We really love the partnerships we have with a number of diabetes device companies, because we fundamentally believe that CGM and insulin pump adoption is something that improves the lives of people with diabetes. For us, the technology side is simple and straightforward. When it comes to Pharma in particular – Lilly, Novo and Sanofi – it is more complicated. We have historically had a policy that we don’t accept money from those three companies due to insulin affordability. We have not taken money from those three, until this new exception for Lilly as one of the five founding partners of Beyond Type 2 as it relates to glucagon.

So how did you make that decision to partner with Eli Lilly on Beyond Type 2?

That was complicated, but it is focused specifically on glucagon rather than having Eli Lilly’s name on it. We truly believe glucagon is an under-utilized product in the space for hypoglycemia, something that isn’t used or understood in the way it ought to be. This is really product brand and company agnostic, as it’s about the fact that you can’t treat severe hypoglycemia with orange juice. Many aren’t aware of that, and if they are they either don’t have glucagon or the kit they have is expired.

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That’s a scary reality that we hope to address this year. For us, the ability and desire to promote glucagon — and more broadly, methods to better treat hypoglycemia – was very important and it’s something we can make real headway on. Our policy still holds in general for the board and myself, on insulin affordability. But this was a way for us to move the needle on a separate issue that’s very important for our community. I’ll also add that we have a good relationship with Lilly, and they’ve always been willing to discuss these issues with us. We plan to continue those conversations and we will in no way back down on our positions relating to high-quality insulin affordability for everyone.

Do you have any broad visions or goals as CEO?

I think we do really great and important work, and I want us to continue to grow those efforts. There’s not going to be a massive shift in direction with me taking this role, though I do want to stabilize some stuff and build on what we can. I’d like to see us internationalized more, so that’s on my mind as to both language and presence. We have been global since day one, but there’s a lot more work we can do on that front. I will add that we can collaborate in ways that we weren’t in a position to do early on. There are a handful of initiatives for 2019 that are already in the works – such as supporting inclusivity and diversity in the diabetes community – and I’m sure there will be a number of other opportunities this year.

Also, I think there are opportunities to educate people not only within the diabetes community, but leveraging those audiences to educate those in the broader world and motivating them to advocate. You’re going to see us doing that more now that we have an audience of such large scale, to really make a difference on some of the broadest public issues. For me, Beyond Type 2 is a way to go about some of this, as it presents new and exciting opportunities!

Thank you so much for taking the time to talk, Thom! We’ve loved working with you since the start of Beyond Type 1 and having you as a “type awesome” member of our Diabetes Community. We can’t wait to see all the exciting stuff ahead.