“Vegas? You’re really going to host a cancer conference in the drinking, gambling and smoking capital of the world?,” a longtime supporter asked me. She wasn’t alone. In fact, many supporters questioned our decision to host last year’s 5th Annual OMG! Cancer Summit in Las Vegas rather than in New York City, where it was held since 2008.
It was a risk – a huge risk. But for every risk, there is a reward. On one hand, our decision could have shut down the organization and tarnished our reputation, creating outrage among donors and loyal supporters. But on the other hand was the potential to transform the brand into a real player on the national stage by elevating its profile within the cancer advocacy sector, among young adults and on social media.
Indeed, the latter happened. Sure there were naysayers and some people did ultimately turn their backs on the organization, but a new era was born for the young adult cancer movement. Since that time, the brand has increased its mailing list and support community by 25 times, improved its monthly social media reach by 2500% and fostered numerous new financial revenue streams that help us boost our patient services, community outreach, and educational programs to survivors, caregivers and providers.
It was not a decision I came to easily. As CEO, I recognize “you can’t make an omelet without breaking some eggs,” but I certainly feel remorse over the loss of loyal supporters who had been there since the early stages of trying to get all of this off the ground; a time when many mistakes were made because there was no road map to follow. It’s a difficult leadership challenge many nonprofit founders and leaders face: How do you move your organization in a direction you feel is right, knowing it may have a negative impact on early adopters? Can we simply decide, as poet John Lydgate wrote, “You can please some of the people all of the time, you can please all of the people some of the time, but you can’t please all of the people all of the time?”
Judith Sharken Simon gives us some answers in her book, Five Life Stages of Nonprofit Organizations. She says all nonprofit organizations evolve through five development cycles, each of which marks a milestone in mission strength, creative vision, social impact, brand loyalty and public trust: (1) Imagine and Inspire, (2) Found and Fame, (3) Ground and Grow, (4) Produce and Sustain and (5) Review and Renew.
As Stupid Cancer heads into its 6th year as a foundation and prepares for the 6th Annual OMG! Cancer Summit (yes, in Las Vegas), I have been reflecting on these stages and how far the organization has come. Yet we still have a long way to go as we are just barely making the transition from Found and Fame to Ground and Grow. Our next five years are about sustainability, viability and longevity.
I see this next chapter of growth as a period where passion meets pragmatism and momentum matures into innovative productivity. It will bring major changes to the core systems and processes that our early adopters and supporters of the brand have come to depend on. But this can only happen if we remain as honest, forthright, transparent and accountable as ever to our core constituencies because these are the friends, fans, followers, fundraisers and volunteers who helped to build the organization from the start.
A key component of healthy growth for any nonprofit is also developing strategic partnerships with major corporations, while at the same time staying grounded with core audiences who value grassroots efforts. For example, Stupid Cancer first partnered with pharmaceutical companies and today our partners include major household brands. We also engage in grassroots advocacy, but it is the business relationships that can help propel a maturing nonprofit to that next stage, ensuring it has the financial security and stability to increase staff, expand programs and reinvest capital internally to build office space or implement new technology.
As nonprofits, we seek a diversified and balanced portfolio, so that if one revenue stream should wane, the others are strong enough to pick up the slack. But we must be careful from whom and where we might accept corporate contributions as we were reminded after the public outrage caused by Susan G. Komen For The Cure and Planned Parenthood. Likewise, corporate contributions can fetter out on a whim due to unforeseen circumstances like scandal and free market impulses (think Enron, Worldcom, Tyco, Lehman Brothers, GM and Chrysler).
As I see the nonprofit I founded emerge from adolescence into young adulthood, I continue to wrestle with these difficult decisions and the cautionary tales of others who have walked this path. But when I welcome so many new – and old – supporters into our global support community, going forward, I will proudly share my vision for our future. It is a future that does not ignore our past. Yes, our brand has evolved, but we know where we came from, and Stupid Cancer’s mission-focused and brand passionate agenda will only continue to grow.
The one thing that people can depend on is how the mission that first launched in 2007 has never veered off course, nor has the charter, the vision or the promise to change the world “one chemo infusion at a time.” And so I shall conclude this essay with the reposting of our manifesto:
Within the young adult cancer community, we hold no one’s disease above anyone else’s. It is not a contest and it is not about body parts. The playing field is leveled when you are just trying to live your life as a young adult and stupid cancer comes along. There are no “good” cancers. Benign tumors can be just as devastating as malignant ones. The burden of issues like isolation, fear, relationships, fertility, parenting, caregiving, careers and insurance are equally shared. We have the right to survive with dignity and quality. We deserve to be treated age-appropriately. Cancer survivorship is an art; and the art of your survivorship is how you choose to get busy living. This is who we are. We are one community. We are hundreds of thousands strong. We are changing the rules.
We are Stupid Cancer!
Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he'd likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew's survivorship and dedication to "get busy living" has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.
A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.
As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization's massive following through award-winning click-and-mortar programs and services.
Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.