Stupid Cancer Founder Matthew Zachary

Founded at a time when social media was limited to Friendster and MySpace, Stupid Cancer soon grew to become the largest cancer support community for young adults in the world. Diagnosed with cancer when he was 21, Matthew Zachary did not set out to start an organization, but to spearhead a movement, an edgy, disruptive brand that has never existed before in the world of cancer. As you will soon find out, Stupid Cancer is the best name there could ever be for this platform without having to cuss. But boy was he, in his own account, the most unqualified person for the job! Joining Douglas Nelson on the podcast, he shares how he eventually learned the ropes of running a nonprofit, the things that he learned along the way, and the future directions the organization is going.

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Stupid Cancer Founder Matthew Zachary

Our special guest on the show is Matt Zachary, a patient advocate, host of the outrageously successful podcast Out of Patients, and Founder of OffScrip Media. Welcome, Matt.

Doug, it’s a pleasure to be here.

It’s a pleasure to have you here. In addition to the introduction I gave, you founded Stupid Cancer years ago. Tell us about Stupid Cancer as an organization and how it came to be.

Stupid Cancer was founded in a time before the internet when we were living on Friendster and Myspace. The corollary doesn’t match to 2020 standards. It came at a time of the heels of Livestrong coming out with some data that cancer in Gen Xers, young adults, was different. We died more. We suffered more. We were misdiagnosed more. At the time, I was nine years out of cancer. I spent a year marinating on if I wanted to lead my career in advertising and marketing and start a movement, start a community where there was no voice of Gen X.

The idea of Stupid Cancer was more of brand experience to build a community. It happened to be a nonprofit. That was the way I thought would be a little easier because I don’t like to raise capital. I’m not a money person. It was born of my own condition because it’s what I wish that I had when I was diagnosed with cancer when I was 21, ten years prior. It went up becoming this force of nature and the largest cancer support community in the world for Gen Xers and Millennials and it still is.

It’s been an impressive growth and a great platform. As you build that community, what lessons did you learn as you went along the way? You knew it was a group that didn’t have a place to call home when it came to research and connecting. You set to build that through a movement. What was the learning along the way? What was the first thing you learned?

I’m going to botch the metaphor. The least likely qualified person is often the right person for the job or something like that. Having zero experience in the nonprofit world in running a business and understanding HR and payroll, I had nothing to do with that. I stepped into this thinking, “How hard can this be?” Famous last words. My approach to building it, I’m learning in retrospect, was different. I wasn’t coming from the whole, you need your mission, you need your vision, you need your purpose, you build your board, and here are your bylaws. I didn’t know any of that. I got my (C)(3) and then, “I’m going to build a website. I’m going to build a brand. I’m going to build this thing and they will come.” They came because it was the first disruptive, edgy thing in cancer. Every day is, “Fuck cancer this. Fuck cancer that.” I couldn’t call it that because there was no funding for that.

Stupid Cancer was where I landed because I felt like there was an opportunity to create something that did not exist. The secret sauce in what I’m learning retrospectively was that I didn’t approach it from a donor-driven revenue model. That’s because of my Woody Allen neurosis. I hate asking people for money. I firmly believe, coming from commercial marketing, that if you created a large community of Gen Xers and Millennials, irrespective of them having cancer or living with and beyond cancer, corporations would still want to poach them because they still need bank accounts and cars.

I like the way you phrased it. You said you set out to start a movement, not to set out to start an organization. We see in the sector, both Canada and the United States, a lot of organizations are struggling because they’ve become somewhat disconnected from the movement that started them. As Stupid Cancer grew, how did you stay connected to that movement you set out to create?

I’m a big fan of allowing the river to carve itself and not plan the path that it should lead. Stupid Cancer was built not by a committee but by the community. I was one person in my second bedroom with nothing, no board, no money, I listened and I asked the questions to pose, “If this can be and do anything, what should it be and do?” I never stopped asking that question. I gave ownership and agency to the people who were grateful that this existed, and more importantly, who wished they had it when they were sick.

Allow the river to carve a path for itself. Click To Tweet

As the least qualified person changing the world, as you set out, you’re in your second bedroom, who did you look to as a leader as you were building this? You empowered those that you were serving. Were there particular individuals who said, “This has to work for this person or that person?”

I had maybe 3 or 4 mentors, but two in particular that are worth discussing in this episode. One was a woman named Carol Cohen. Carol is the inventor of cause marketing. She’s the female Don Draper of the ‘90s. I knew her through my old boss at the agency I worked at, who knew I was a cancer survivor. He introduced me to her. She wrote the book on Harvard Business Review about cause marketing with the pink ribbons and all the stuff with laces and yellow wristbands. I leaned on her to understand cause marketing, market analysis psychogeography. How is a Gen Xer different than a Gen Xer affected by cancer? She helped me appreciate the brand value and the brand promise of what Stupid Cancer offered to people, which was antithetical. Instead of a Hallmark card and your pity party, it’s okay to be pissed off but let’s do something about it together.

My other mentor was a genuine woman. She passed away. A tremendous influencer who founded half of the survivorship standards in the US, Ellen Stovall. She was the first chief executive of an organization, it’s still around, called the National Coalition for Cancer Survivorship in the States. It was founded in 1996, around the year I was diagnosed. I met Ellen. I had gone seven years to the ‘90s not knowing there was anyone else I could talk to that also had cancer in their twenties.

I finally met this guy named Craig. Craig was on the board of directors of that organization that Ellen was the CEO of. Ellen adopted me and helped me understand what was advocacy, what needed to be done, and here’s how you figure out how to structure what you think you’re going to get done. I was a bit of a sherpa all those years. Between Carol and Ellen, I feel like I was metaphorically, pygmalion, sculpted, and crafted into understanding the niche market I was getting into, but how to monetize that without being donor-dependent.

That’s an important distinction. How early on did you know you wanted to maintain that community focus versus being donor-dependent, as you described?

I was creating something that I wish that I had. I firmly believe that it was the media. Back then we used to call it community wealth, the economic viability of people regardless of why they’re in this community to drive the growth of the organization. I was given an opportunity unlike any other organization and that is the three thread of why I’m here and talking to you. I was offered the opportunity to host the first cancer internet radio show. It showed up one day through another mentor of mine, the late Selma Schimmel, who was a terrestrial AM radio cancer broadcaster. Her organization was offered a digital version. They didn’t know what that was. They said, “Mikee likes it. Give it to Matt. We’ll see what he does.” I’m an NPR junkie. I did college radio. I had a sense of the potential here.

I bought the gear. It’s like today’s gear but compared to gear years ago. My bedroom was littered with mixers and all sorts of crazy crap. I started on May 28, 2007, with the Stupid Cancer show and that became the hook. Corporations, health adjacent brands, pharma companies, bio companies, insurance companies, they had a broadcast capacity to spread whatever they wanted by me hosting stories every Monday, live. I did that show until I exited in January of 2019, 450 episodes, thousands of interviews, every single Monday, 4.5 million listens collectively over those years. You don’t know your first but I saw the opportunity. It’s unique and irreplicable by today’s standards. That was the first mechanism that gave me comfort that I could do sales and marketing sponsorships and corporate responsibility donations than having to beg for money from the average cancer person dying that didn’t have money.

That’s a powerful platform to build from. I’m sure it didn’t feel powerful on that first day, but it built up quickly. Do you recall the process of moving from your second bedroom to adding staff and eventually having offices and those sorts of stuff? Walk us through that change and that transition?

Humble beginnings. I went from my second bedroom, I was living with my wife with no kids. I had a friend who knew a real estate guy in the city and he said, “We’ll put Matt in here.” Here was a windowless, abandoned elevator shaft in a city building in Tribeca. My first legitimate “office” was an abandoned elevator shaft that they put cement over the bottom and top. I was there for a year. I had to bribe the post office and FedEx to deliver to me because it wasn’t a legal address. Talk about life hacking your way into the nonprofit scalability. I then moved from that space to another windowless closet room that used to be the toxic cleaning supply room for the entire building maintenance staff. The cancer kid gets thrown in the former toxic cleaning staff windowless room with no HVAC. Finally, after 4.5 years, we had enough money to build an office to suit and that’s like, “We finally made it. We have windows and desks and doors that open and close.” It was a phenomenal experience to have to grow that and that was the tipping point, but you got to pay your dues.

It sounds like there are lots of moments to remind you to stay humble along that journey.

DSP 10 | Stupid Cancer
Stupid Cancer: If you created a large community of Gen Xers and Millennials living with and beyond cancer, corporations would still want to poach them because they still need bank accounts and cars.

 

My bookkeeper, who I’m still friends with, is the only one that remembers coming to the abandoned elevator shaft to come in every month and check our books. It’s like, “You should probably start putting this in QuickBooks.” I’m like, “What’s QuickBooks? Let’s go back to basics.” Complete and absolute humility in what I had to go through to build this, with the deepest respect for people who helped me build it.

As you’re building it, one of the things I’ve noticed in organizations as they grow is that there become certain issues that take on an air of mystery or a polite elephant that sits in the room. In most organizations and few organizations, they manage to keep the windows open and the air fresh and clean. How did you balance that? How did you make sure that you didn’t develop those polite elephants in the room or those secret issues that can slow growth?

Everything was new. It was a new idea. It was a new concept in nonprofit scalability. It was a new national cause. It was a shiny object at a time before the housing crisis and Facebook. The media liked the disruptive nature of what we were bringing to market. Four big things happened randomly that accelerated the visibility of the organization, me in a bedroom, in a windowless elevator shaft, or whatever.

The New York Times did a piece out of nowhere about me and this organization. They didn’t talk to me. They just showed up. It was the same year they made hyperlinks on their homepage so people clicked. After that, the journal did a piece on me because I had met her at a random event unrelated to this. Time Magazine named us a top 50 website for the entire year of 2007 on their cover. I beat LinkedIn and Yelp on a website I hand-coded because I didn’t have a web developer. There was no Wix or anything like that.

I landed a job consulting for Lifetime Television on a TV show they were producing. They wanted one of the characters to be me. I don’t know how they did that. I wound up doing script advising for Lifetime TV at a TV show to star in a scene about me where I played myself that I wrote and that went to the Hollywood Reporter. The Hollywood Reporter did more things. They won this weird Beatles award for being a musician, but I wasn’t a musician anymore. That was ‘07. These are not normal things to happen.

It’s hard to write in a strategic plan.

There’s no strategic plan for that. Listening to the community, “Can we do meetups?” I’m like, “What’s a meetup?” We hate the whitewater therapy crap inside our hospital because only 80-year-olds are there. I said, “Why don’t you meet up at a bar? We’re not drinking, but let’s get together. Let’s have our own therapy group at the bar.” Stupid Cancer Happy Hour was born of someone else’s idea. We took pictures and we put them up on Myspace or whatever it was. Other people were like, “Can we do that?” I’m like, “Of course, you can.”

The Stupid Cancer Happy Hour was the first community organizing event of Stupid Cancer. There were hundreds a year, all over the country, in Canada, Europe, and Australia. This goes back to Steve Jobs’ business mantra which is, “Don’t give people what they expect or what they want. You have to give them what they didn’t know they needed or wish they had had.” As soon as you discovered Stupid Cancer, there was a light that went off in your head, it’s like, “How have I not known about this? I’m going to tell people about it.” It was brand new, first of its kind. Everything accelerated from the perspective of growth through partnerships and corporations and business transactions. We launched a store. A nonprofit had a retail store in 2008. We were selling a $250,000 a year in merch that sustained everything.

What were you selling?

Everything from T-shirts and hats. We produced a physical credit card that was called the Cancer Card. The Cancer Card meant nothing. It was a gag because everyone says, “Be pitied and play your Cancer Card.” People bought them in the thousands to give to the cop when they got pulled over or whatever. Once Twitter took off, the #TheCancerCard was the thing for a while. People were tweeting pictures of the Cancer Card. Bumper stickers, the phrase Stupid Cancer, it’s what Homer Simpson would say. It’s good with Gen Xers.

It’s okay to be pissed off by cancer, but let’s do something about it together. #StupidCancer Click To Tweet

Was there a moment that you felt like this movement is taking off? I assume when you’re on the front page of The Wall Street Journal, you’re in Hollywood Reporter, you know something’s happening. Thinking about the movement itself and the people that you serve and the community you’re building, was there a moment where you’re like, “This is happening. This is going to work.”

I would say it was when we took our annual trade show to Las Vegas from New York and created the first young adult cancer multiday destination conference ever. We were at the Palms Casino. Let’s put this in context. This would never be able to pass for today’s standards. We took 800 cancer patients, survivors, advocates, and caregivers, crammed them into the Palms Casino with cigarette smoking and the Playboy Club, gambling and liquor. We had 3.5 days of the most insane steam valve release party with workshops, keynotes, plenaries, micro sessions, social events, comedians, and film. We worked with Seth Rogen, of all people, because that was the year 50/50 came out. We screened it. He came and talked. That was like, “How the hell did we do this?” That was the moment. You can go back in the annals of time with anyone I’ve worked with. The conference is called OMG, like, “Oh my God.” OMG 2012 Vegas, the Stupid Cancer conference. That’s the moment.

Seth Rogen, a good Vancouver boy. There’s another connection for us there.

I’m going to pay homage to Livestrong for a moment because they did set the tone for what the young adult cancer movement was going to do. It didn’t have to be a nice-to-have, which nice-to-haves are nice to have. The need to have was to build equity, parity, and dignity in cancer care for not 80-year-olds and not children. They set out with this phenomenal strategic plan, a public policy doctrine, and a population science mantra on what could be achieved in the coming decades.

Everything that we did, while amazing and fun and party-filled and experience-driven, was through the lens of, how do we improve outcomes? How do we end isolation? How do we improve the quality of life and mental health issues? How do we guarantee fertility preservation? How do we create student loan debt forgiveness? There were real tactical underpinnings to everything we were doing beneath the surface and under the hood.

Livestrong continues to be a model for movement organizations, whether they’re in cancer or anything else on how to bring people together. It is a business model that survived its founder.

Yes, it has. It’s still here. I know everyone there. What they stood for and what they still stand for, they’re in an optically different place now, is this idea. They were the first Unitarian brand in cancer that was about your quality of life and not your quantity of life.

Speaking of transitions a little bit, a part of your story that I’m interested in and our readers will be interested in is that you transitioned this organization that you founded. When you talk about it, your energy comes through your passion and your love for it comes through. January 1st, 2019, you transition from being the CEO to a strategic advisor role. When did you know it was time to start that transition?

There’s a fabulous little expression that my dad shared with me, which is that stepping down is hard but knowing when is harder. When I started at Stupid Cancer, I was newly married and no kids, off a decent career. I quit everything to not make a living for three years or whatever it was going to take. No risks and nothing to lose. I could throw my entire weight into this without fail and work 1,000 hours a week and travel. I had nothing outside of this. I was committing this to my entire life. In 2010, we had twins. Over the course of them moving from meatloaf to semi-conscious to sentient creatures, I started to realize, like, “They don’t know who I am. I was that dad, traveling too much.” It got to a point of a reality check by the time they were seven that I was missing all the things.

Serendipitously, this giant congress we did every year happened to be their birthday weekend every year. There’s another congress I had to attend, which was my birthday weekend every year. Her dance recital was on a weekend. I had to be somewhere every year. You start to put those things together, coupled with the fact that you’re getting older, things hurt, things are making noises that it didn’t use to do. You’re getting a little fatigued. It stopped being as fun. I don’t say that with any degree of reticence.

DSP 10 | Stupid Cancer
Stupid Cancer: There were real tactical underpinnings to everything that the organization was doing beneath the surface and under the hood.

 

I had to reconcile a couple of things. The first of which is I went back to those documents, Livestrong’s call to action strat plans. I re-read them after fifteen years. It turns out that nearly everything in those calls to action has been accomplished. It doesn’t mean that there is still cancer, that things aren’t still terrible. It means that Stupid Cancer played an active role with our dozens of partners and the other incredible nonprofit organizations and the health systems and the policy groups to rectify the inequities in young adult cancer. To me, that means that cancer in young adults sucks equally as much as everyone else instead of way worse than everyone else. The Sisyphus was over. I didn’t need to push a boulder up a hill. There was nothing to break anymore if I can use that expression.

You have that conversation with yourself. The mission you set out to serve has largely been served with many more missions to go. How many staff work at Stupid Cancer about the time you’re having this conversation with yourself?

We had 6 or 7 people and two strat advisors on the team. What broke me was I was in LA the summer of 2018, three consecutive weekends in a row for three different things, fly home, fly back, and fly home. My head was shot. I was on my way to the airport and someone was driving me and I broke and I said, “I don’t think I can do this job anymore.” Had it been my wife or my dad or someone else that would have freaked out, but all she said was, “Whatever you do, you’re going to be fine.” It’s all I needed to hear at that moment, not like, “You’re leaving? What’s wrong with you?” That would have been it if it was anyone else. That was the honest permission I received.

I got back. I told our strat advisor, “My wife, my dad, they all said the same thing.” They said, “What took you so long?” Of course, you’re telling me the board and the staff, and what’s going to collapse? I can’t believe the shock around the world. There are 85,000 people read my LinkedIn exit post. I was not expecting this. Honestly, the therapy in exiting was positive. We urgently made a succession plan, which didn’t exist, we methodically spent seven months. If you’ll turn of phrase, de velcroing me from fourteen years of sedimentary infrastructure. It gave me a nice strategic runway to prepare and plan for what I didn’t know was going to happen in 2019, which turned out to be a wonderful sabbatical.

The transition from a classic founder to an organization that is led by capable professional management is a challenging one. There are lots of unfortunate examples of that transition, which I’m sure you’re well aware of and are well aware of. What was the conversation you had with your team about how to make sure that the succession plan was going to position the organization for the best possible outcome when you were de-velcroed?

The magic word is assurances. I wasn’t going to vanish and snap my fingers and Thanos myself into the ether of God knows what. I was not going to be the break glass if you need Matt guy. I was going to be available as needed to do what needed to be done. There had to be a certain aspect of cutting the cord, but there also had to be a certain aspect of slowly pulling a Tootsie Roll apart.

What were the conversations like with the team that had been with you for a while? Were they surprised? It sounds like your family was aware that it was time for a change. The team that was closest with you, how do they respond to your decision to leave?

They were incomprehensively shocked beyond reason.

That’s the sign of a good movement.

It wasn’t just my board, my staff, our key stakeholders, and donors, we have some donors, which is cool. I wrote this well thought out exit. Most people exit on LinkedIn publicly. I’ve been focused on my LinkedIn strategy for years. I’ve been cultivating a phenomenal community on LinkedIn. I wasn’t expecting the virality of the response. Everyone’s response was a combination of, “It’s about time. What took you so long? Thank God, good for you. What is going to happen to the planet now?” I’m like, “Thanks for that.”

Stepping down is hard, but knowing when is harder. Click To Tweet

A lot of it was, “We’re going to be fine. I’m not going anywhere. We’re going to make sure that the mission stays.” It’s never going to be the same. You can’t expect someone to replace a founder, but you want to make sure that you stock up with the right amount of talent who understands how to run the charity and recognizing whatever its SWOT analysis might be during succession planning, and where the gaps are that I did that other people didn’t do. I wound up wearing nine hats so they had to record the entire company to hire different people. That was unique to this particular organization. As it stands now, they’re doing fine. During the pandemic, that was standing. They pivoted. They’ve done all the right things. They’re still funding. They’re evolving. I have moved into more of an in-case emergency break glass for Matt’s role because that’s all I need to be for them and that’s healthy.

Were there surprises for you as you went through that transition from being the founder and run off your feet CEO, visionary, to getting closer to that January 1st, 2019? What was that process like for you?

It was terrifying because you have so much ownership in what your baby was. You can never trust anyone to do it the way you did it. You have to reconcile that it won’t ever be the way you did it because you’re choosing for it to not be the way you did it. If you stuck around, it still wouldn’t be the way that you did it because you’re old and you don’t like your job anymore. I don’t want to wake up and hate what I did. I wasn’t there at that point. I was at a point where I like to break things. I like to disrupt things. I like to do things differently.

Once it became a stable multimillion-dollar organization with TPS reports and expense reports, I didn’t want that. I like the scrappy crap. It was a testament to the success that it achieved that level. Most nonprofits don’t last for two years and earn more than $25,000. In the annals of intellectualizing, I was okay with leaving. You’re wired. Your entire endocrine system is wired to go there every day and spend every moment and think this all day, every day. All of that stimulus goes away. That’s what I was worried about.

I want to ask you what you did on January 1st or January 2nd. What was it like waking up in the middle of February after the newness of the decision, the next chapter has started? You may not know where the chapter is headed. What did that feel like to be that far away from the organization?

I was given a great exercise by a good executive friend of mine and he said, “100, 100, 100.” I said, “What does that mean?” “You want to have 100 breakfasts, lunches, brunches, dinners, and drinks with 100 people over the next 100 days.” I did that. I traveled. I met people. People were magnetized. It’s like, “What the hell are you doing next?” I was enjoying the attention. I convened with 100 people over 100 days for 100 meals.

It was an astonishing leadership exercise in self-worth and self-identity and recognizing paths and forgiving yourself and having guilt. A lot of those people were fellow founders, either nonprofit or private sector exited or whatever. They had a lot of peer-to-peer of what it’s like. The nonprofit founder exit club doesn’t exist. I found that level of comfort by doing that exercise. February, March, and April were filled with extraordinary experiences to keep me busy that I didn’t need to have a plan.

You mentioned 2019 turned into a great sabbatical. What are you doing now? Tell us a little bit about what OffScrip Media is.

I had that wonderful time to reflect and remind my kids, I exist and become their dad again and spend all the time I wished I had been able to do and reconcile everything in my life. It was what I needed and what I deserved. I’ve learned to accept that I deserved it. That was one experiment. The one thing I genuinely missed, as a three thread, like, “What could I have been doing that I missed doing?” It is being behind a mic and talking to people. I had created a huge following by being the first broadcaster in cancer and deemed the Howard Stern of cancer or whatever the hell they called me. I love this medium. I love audio and radio.

Once I left, they had to sunset that show because I was the talent. They may bring it. It’s entirely up to them, but I continually got oddly unanimous consensus from random people that know each other, “You better get back behind the mic somehow, but don’t ‘start a podcast.’” I put thought, pen, intelligence, and community to paper. We built the idea of OffScrip Media to be all the things that the nonprofits can’t because of the nonprofit limitations with all the wisdom of how private sector businesses have failed because they don’t understand the nonprofit business model.

 

It’s a Reese’s Peanut Butter Cup of broadcast media with his advocacy DNA underneath it, but a commercial ability that makes sense to the indus

DSP 10 | Stupid Cancer
Stupid Cancer: It was terrifying because you have so much ownership in what your baby was. You have to live with the thought that it won’t ever be the way you did it.

 

try. I’m back behind the mic with my show. We have four other shows on our network cultivating a network of podcasts and talent in the advocacy universe. We’re doing extraordinary client work in delivering audio content that’s qualitative to the right patients and narratives that deserve it. It’s almost this natural evolution for me to be standing here, behind the mic where it all started in May of 2007.

I feel like I could ask you questions all day long about that transition. We’re in our mid-70s in terms of the number of episodes. We’re a few hundred or nearly 1,000 behind you. Maybe we’ll catch up one day. My final question for you is to reflect on being a founder of an organization that has had an impact and built the community that you did with Stupid Cancer. What advice would you give to someone who was seeing an opportunity, seeing a need, and thinking of starting their own organization?

In 2020, if you want to take COVID out of the conversation from a rhetorical perspective, if you’re in that narrow window of, “Something bad happened. I want to do something about it. Should I start a charity?” versus, “Something bad happened. I’ll start a charity.” There’s a lot to consider in what it means. I would guide people to consider saturating themselves with two specific individuals for this onboarding to whether this is right for you or not. I like to say, “Don’t start a charity,” is clickbait because it needs to be a conversation. It’s too easy to start one, at least in the States, where you don’t understand that it’s a business. You’ll go full throttle. It’s not going to do what you want.

Dan Pallotta, a dear friend of mine, I met him many years ago. He has been the most disruptive force in recognizing the gaps in the business of nonprofits. He has one of the most listened to TED Talks that you can google called The way we think about charity is all wrong. Start with that. There’s another guy named Vu Le, who is a nonprofit executive guy, who is as equally pissed off. He started the blog called Nonprofit with balls, which he pivoted to Nonprofit AF.

It’s down the road in Seattle here.

I know him. Every single time he posted we would giggle our crap together. It was amazing. He said all the things in our head that I used to say in 2007. NonprofitAF.com and DanPallotta.com are the onboarding to figure out if nonprofits are right for you, like a farmer commercial.

Cancer in young adults sucks equally as much as everyone else’s instead of way worse than everyone else’s. Click To Tweet

Would you do it again?

No.

Why?

I understand that you can do a better job impacting society without needing a nonprofit.

What lesson can the nonprofit sector take from that? That’s a near condemnation.

There’s a reconciliation coming around the value of the nonprofit business versus how the private sector has commoditized the needs that the nonprofit sector has in yours. I’m not taking away cancer research. I’m not taking away Habitat for Humanity. I’m not talking about the tangible, Doctors Without Borders, those are metric-driven, tangible organizations where you know where your money goes.

The esoteric groups that are incredibly critical that do the behavioral research and the peer support and the experiences and the financial assistance and the navigation when shit happens, how do you make your life not as horrible? There are different ecosystems that have cropped up in the past couple of years that are not augmenting but taking the place of. As a private sector industry, you can invest in yourself and build scalable models and not be donor-dependent, which speaks to the fragility of the nonprofit sector, which collapses in a pandemic or housing crisis.

You have to toe the line between, where’s the best bang for the buck if you are in need? Do you need a nonprofit community when you could find one on The Mighty, on Facebook, on Talkspace, or on Betterhelp? These are the markets that are the choice for people to find what they need that’s not terribly tangible. It’s not a reckoning, per se, but through the lens of various specific missions that are about the quality of life, the rare disease communities, the death and dying committee, the bereavement communities, do people need nonprofits? I’m not saying they don’t. This is a brand-new conversation that’s come up that COVID has been this ebb tide that is starting.

One of the catchphrases for the sector through COVID has been resiliency. The biggest fear that I have for the sector is that the world outside the social profit sector is changing so much more quickly than the world inside the sector. Organizations are not changing quickly enough to adapt, and that’s this ebb tide that you described as a result of COVID. I take probably a more optimistic view of the sector than certainly the one you described in terms of there is a need. It is going to take a redefinition for organizations, particularly ones that are providing advocacy and are building community as you are experienced in because there are other places.

We’ll split it. We’ll chop the pot on that one. There’s a lot of value in what you say about the importance of organizations of defining the value of what they’re delivering to the communities they purport to serve. When organizations drift or when their mission gets a little cloudy, people often think, “This is a fundraising problem.” In our work at The Discovery Group, we see often it’s a mission problem. It’s an alignment problem. It’s rarely a fundraising problem. If you’ve got those first two things right, the fundraising tends to look after itself if you’re doing it right. As our final question here, what are you most optimistic about when you think about the advocacy space and the community space, either what you’re doing through OffScrip or what’s happening back at Stupid Cancer?

Through the lens of oncology, there is an actual reckoning coming in terms of patients realizing that they can be advocates. That word can be self-defined, but the value of someone who chooses to enter the advocacy world, whether it’s policy, lobbying, or telling your story is much more commoditize-able toward tangible impact and progress than it has ever been before. The world needs more health activists, cancer patient advocates, rare disease advocates, more than ever before. The catalysts and the vehicles to get there are magnificent.

That’s a great place to leave the conversation. Thank you very much for sharing that, Matt. Thank you for being on the show.

Thanks, Doug. Be well.

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About Matthew Zachary

DSP 10 | Stupid CancerTen years after surviving brain cancer at age 21, Matthew Zachary founded Stupid Cancer, the world’s largest young adult cancer community, and launched The Stupid Cancer Show, the first health podcast, which amassed a global listenership in the millions.

He stepped down as Stupid Cancer’s CEO in 2019 and launched his latest venture, OffScrip Media, the first audio broadcast network focused on consumer health and patient advocacy. True to form, Matthew, is now back behind the mic where he belongs with his new show, “Out of Patients,” hailed as “the people’s voice in healthcare.”

As he continues to be pissed off with the dumpster fire that is our healthcare system, the through-line of Matthew’s entire career is patient advocacy; and he will not stop calling out all sorts of Stupid BS that shouldn’t have to be a thing.

Matthew is also an acclaimed keynote speaker, accomplished film composer, and award-winning concert pianist.

 

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