Interviewed by Kevin O’Neill

Q&A with the president and CEO of The Leukemia & Lymphoma Society

“A cancer diagnosis is already scary and overwhelming, but having cancer amid the coronavirus pandemic is even tougher,” said Dr. Louis DeGennaro, CEO of The Leukemia & Lymphoma Society. “Cancer patients need us now more than ever.”

A global leader in the fight against cancer, LLS is laser-focused on helping blood cancer patients, their families, and healthcare providers during the pandemic. LLS continues to invest in breakthrough research to accelerate better treatments and cures while ensuring patients have access to the care, support, and resources they need.

LLS has invested nearly $1.3 billion in cancer research over the past 70 years. Its mission is to cure leukemia, lymphoma, Hodgkin lymphoma, and myeloma while improving the quality of life for patients and their families.

Over his 15 years with the organization, Dr. DeGennaro has kept that mission top of mind in every business decision. However, it’s not enough to have a strong mission, he says. Like with every business, the nonprofit must drive real results — and LLS has.

Among its many breakthroughs in immunotherapy, genomics, and personalized medicine, LLS revolutionized treatment for chronic myeloid leukemia. Today, a diagnosis is no longer a death sentence — that drug alone has saved hundreds of thousands of lives and counting. The key to such incredible success has always been balancing mission, innovation, and the business.

While not every organization is working to cure cancer, every business can be driven by purpose, Dr. DeGennaro tells us. Kevin O’Neill, managing partner and co-founder of Acertitude, sat down with Dr. DeGennaro to discuss some of the lessons he’s learned from leading a mission-driven organization. We hope you’ll take them to your own business.

Follow your passion

Kevin: Give us the quick walk-through of your career path. How did you discover your personal mission and get to where you are today?

Dr. DeGennaro: One of the biggest lessons I’ve learned through my academic and professional journey is to find something you care deeply about. Passion will help you get out of bed every morning and find fulfillment in life and at work.

I can recall the moment I knew I wanted to devote my life to helping people through science. I was in high school biology class learning about the Krebs cycle, of all things. To bring my dream to life, I got my Ph.D. in biochemistry at UC San Francisco and continued with med school at Yale. In my first job, I got the opportunity to work in the first laboratory to clone a gene expressed exclusively in the nervous system — a milestone for Alzheimer’s and other brain disease research.

That experience propelled my career to the neurology department at the University of Massachusetts Medical School. I spent seven years mentoring students and loved it. I eventually craved the fulfillment of delivering tangible results for patients in need, so I entered the world of big pharma and biotech for 15 years. At Pfizer, we created a blood collection tube that preserved blood cells for seven days without any special handling. I realized this could be useful in diagnosing leukemias and lymphomas, which led me to LLS.

My work has evolved over the years, but my mission has been steady: helping people — whether I’m mentoring students or finding a cure for leukemia. If you keep your “why” constant regardless of what you do, you’ll find joy and make a difference with your business.

Nonprofit reality

Kevin: Tell us about taking the leap from the private sector to the nonprofit world. What advice would you give leaders who are considering a similar switch?

Dr. DeGennaro: Transitioning from the corporate to the nonprofit world can be difficult, but it was seamless for me. There are several reasons why, which can help you determine whether making a similar move is a good fit. First and foremost, LLS’s purpose aligned closely with my own. Think about what causes you identify most closely with and then pursue them.

You should also build on your background. Six years ago, I became the CEO of LLS. All the skills I gained through my other positions — including chief scientific officer and chief mission officer — prepared me to run the organization. Everyone’s career trajectory is different, but I know firsthand how valuable it is to hold multiple roles in an organization before stepping in as CEO.

Similarly, you’ll want to conduct extensive research on the organization before you step into a role. Specifically, dive into the business side to understand what truly goes into keeping it running. The best advice I have for CEOs and leaders entering this world is to run your nonprofit like a business. Before I came on board, LLS didn’t have a fully burdened P&L. Now that we’ve made that change, I’m confident in our ability to forecast revenue and expenses.

Nonprofits can be more challenging than running for-profits. Take motivating a volunteer workforce, for example. When the CEO of a for-profit company says, “Go left,” the company goes left regardless of how much maneuvering is necessary. At LLS, we have to coordinate 1,200 staff members and thousands of volunteers. When you have a strong mission guiding you, however, it’s not so hard to “go left.” Running a nonprofit requires a degree of flexibility and adaptability that every business leader can appreciate.

Results matter

Kevin: Like any business, a nonprofit has to be sustainable. How do you keep LLS on the path toward its mission?

Dr. DeGennaro: A big similarity between nonprofits and for-profit businesses is fundraising. Think about it: Charity fundraising is similar to raising a VC or private equity fund. Like investors, donors commit money not only because they believe in your cause but also because they think it will generate ROI.

When I became the CEO of LLS, it was a $200 million organization; it’s now $400 million. What’s more, we’ve seen an average decline of 32% in blood cancer death rates since the 1990s. People support LLS because they know their money is making a difference in the cancer community. They know we work tirelessly to find cures and ensure patients can access the lifesaving treatments they need.

In any business, profit is important. The only difference is how we distribute it. As a nonprofit, our biggest concern is generating sufficient revenue for all the things we want to do on the mission side, like finding more cures, putting on educational programs for patients and their families, and more.

Just like a for-profit organization, we have to keep all stakeholders happy by showing tangible results. The only difference is there are many more stakeholders involved (volunteers, patients, families, etc.). Having a mission that people can get behind makes it easier to keep everyone motivated, happy, and likelier to work toward providing results.

Lead with purpose

Kevin: The average life span of an organization is about 10 years; LLS has been around for 70. How do you build an organization to last?

Dr. DeGennaro: There are many reasons, but it comes down to having a relevant mission and showing progress against it.

If you haven’t settled on a mission, start by asking yourself why your organization exists. Whatever the answer might be, everything should flow from there. Incorporate that mission into your messaging, strategic priorities, and branding to help your organization stand out.

To thrive, make strategic decisions aligned with your mission. Consider this: At LLS, we can help one person at a time through patient services. However, we can help countless people at once if we successfully change policy and enact legislation in the best interest of all patients. These are the decisions leaders must weigh — putting every dollar to work in the most impactful way.

If we didn’t believe in our mission wholeheartedly, we wouldn’t have helped make one of the most significant breakthroughs in CAR T-cell immunotherapy for leukemia. Twenty years ago, no one was willing to risk funding this research, but we did to great success. In 2017, the Food and Drug Administration approved this revolutionary therapy that is considered a game-changer for cancer treatment. Who wouldn’t be excited to support a mission like that?

Inspire your team

Kevin: You’re known for your ability to bring out the best in people. How have you made your best hires, inspired and unleashed their potential, and kept such a significant group of stakeholders motivated to LLS’ mission?

Dr. DeGennaro: One of the most important qualities of a CEO is building a strong team. Remember, inspired people make for an inspired team. To recruit the right people for our business, we seek leaders both inside and outside the nonprofit world. Finding leaders with diverse experiences, who can view the organization through a unique lens, helps LLS make progress toward our mission.

All business leaders can learn from this. In some cases, it takes someone from outside your industry to push your organization in the right direction — even if that sounds counterintuitive. Diversity in all forms is not only a good thing, but it’s also good business. LLS is going to find a cure because we have the best minds, the best perspectives, and the best skills coming together.

Beating cancer is a team sport, so collaboration is critical. When your team’s expertise fuses, you can make something bigger and better. Frequent communication is also imperative. I always use our mission to fuel discussions, which I find inspires and motivates my team. Also, talking about the progress your organization is making toward its goals will help team members see that they’re part of a winning team. Another secret to our success is the longevity of our leadership, which comes back to hiring people who offer different perspectives and are passionate about our mission.

LLS is where it is today because we have a passionate team working toward incredible outcomes. Our results speak for themselves: We’ve helped advance 48 of the 55 FDA-approved blood cancer treatments since 2017, and we’ve funded research that I believe is the first pathway to cancer prevention.

Our unrelenting passion for our mission keeps our team connected and is the secret to our endless motivation to find a cure. We’ve survived for 70 years because of what we do for patients, family members, and donors. With a strong mission and a passionate team, you can similarly build an organization that lasts.

Defining Brilliance with Dr. DeGennaro

Purpose is...the reason I get up every morning and the reason I come into work. It's the mission of an organization.
Leadership is...sharing responsibility with others.
Brilliant leaders are...those who are empathetic, data driven, and decisive. They can take data to make decisions, but they always keep in mind what others are going through.
Success is...building a high-performance organization.
I perform at my best when...I'm thinking about the future and using my skills as a builder to get there.

To support The Leukemia & Lymphoma Society’s lifesaving mission, click here to donate today.

During the pandemic, blood cancer patients need our help now more than ever. During this crisis, their lives are not only disrupted but also at risk. They face critical life decisions every day. Even going to the doctor or picking up medicine can be life-threatening.

During this difficult time, LLS is providing immediate, urgent support to blood cancer patients and caregivers through education and support programs. The organization is also advocating for legislation to help alleviate the cost of patients’ cancer care.Throughout its 70-year history, LLS has supported groundbreaking scientific research leading to major treatment advances that have resulted in increased survival rates for blood cancers — but we can’t reach a cure without your generous contributions.

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