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Surviving Lance

Diagnosed three times with cancer, CEO Doug Ulman fights to keep Livestrong’s mission alive.

His appearance on stage last fall at Centennial High School’s auditorium, with friends Brock Yetso and Lance Armstrong in tow, should’ve been a simple, happy homecoming for Doug Ulman. The 36-year-old CEO of the Livestrong Foundation had won three state soccer championships here with Yetso, never losing a game. He’d gone on to play at Brown University before receiving a cancer diagnosis just prior to his sophomore year and then, remarkably, survived two more bouts of cancer in school while also launching the Baltimore-based Ulman Cancer Fund for Young Adults. Instead, however, a cloud hung over the “Lance Unplugged” event in the Centennial auditorium. Yetso, hosting the forum with Armstrong and Ulman, noted more than 50 cancer survivors were signed up for the Half Full Triathlon in Ellicott City the next day—which Armstrong had entered at the last minute. “Why this race?” Yetso asked the Tour de France legend. “You could do any race in the world.”

Armstrong responded with an awkward smile and a glance toward the audience—acknowledging the elephant in the room. “Well, that’s technically not true.”

The U.S. Anti-Doping Agency (USADA) had just handed Armstrong a lifetime competition ban after he announced he’d no longer contest the organization’s blood-doping charges. In truth, he came to Howard County because race organizers relinquished their USA Triathlon sanction just for him—in hopes his participation would raise more money for its charity, the Ulman Cancer Fund. The $50 Lance Unplugged tickets sold well, and auctioning off a Trek bike and jersey signed by Armstrong raised another $7,500. Still, there was a sense the other shoe was about to drop for Armstrong. Which it did.

Three days later, the USADA published its final report—more than a thousand pages of evidence and testimony from more than two dozen people, including 15 cyclists—documenting payments, e-mails, and test results proving “the use, possession and distribution of performance-enhancing drugs by Lance Armstrong.” Two weeks after his Centennial High appearance, Armstrong was stripped of his seven Tour de France titles.

Ulman admits today he’d held private doubts about the veracity of Armstrong’s denials for some time. But it wasn’t until he read the USADA report that he was forced to acknowledge his good friend—Ulman got married in Armstrong’s Austin, TX, backyard—had lied to him for years. “There’s not one thing in particular that I remember, except that it was a sad occasion,” Ulman says of Armstrong’s apology to him over dinner before his infamous confession with Oprah in January. “It was definitely emotional.”

Of course, Ulman’s broader concern was the hit Armstrong’s cancer foundation—whose mission had become his own life’s work—would take in the fallout around the disgraced cyclist. Suddenly, the nonprofit’s survival was being questioned.

“There is no playbook for dealing with this sort of thing,” Ulman says.

A compelling public speaker with his own powerful story, Ulman is now assuming what had been Armstrong’s public role. Among high-profile media appearances, he appeared on Today shortly after the USADA report came to light. In March, he did a Q & A with Time magazine.

He also has had to assume a greater role in motivating Livestrong staff and volunteers, admitting morale at Livestrong headquarters suffered a blow as the bottom fell out of the founder’s story.

Sitting in his office, a yellow Livestrong bracelet still around his wrist, Howard County Executive Ken Ulman recalled the summer afternoon 17 years ago that led to his younger brother’s initial cancer diagnosis. “We were running together through Dorsey’s Search [a Columbia neighborhood] and he kept coming back to check on me—because he was faster and in a lot better shape,” says Ken Ulman, a former Centennial point guard, but by then no longer a competitive athlete like his brother, who was preparing for his second season in the Brown midfield.

“He had asthma, but it had always been manageable. This time, though, he couldn’t get his breathing under control and went to Howard County General. They took a chest X-ray, almost as precaution, and that’s when it showed up.”

The X-ray revealed a tumor attacking rib cartilage in the then 19 year old. Ultimately, he underwent surgery for bone cancer, but was far from in the clear from cancer, and, over the next year, Ulman was diagnosed and treated twice for malignant melanoma. Determined to play soccer again, he returned to help Brown to three Ivy League Championships in four years. At the same time, he was turning his attention to a new challenge.

In college, Ulman, who could pass for Armstrong’s younger brother and possesses a similar blue-eyed intensity—albeit matched with earnestness rather than arrogance—studied American history and education. He had every intention of becoming a social studies teacher and soccer coach. But while in school, with assistance from his family, particularly his mother, long active in the Howard County community, he founded the nonprofit Ulman Cancer Fund. It provides support, education, and resources to young adults diagnosed with cancer, including help navigating the health-care system.

“Cancer may leave your body, but it never leaves you,” says Ulman, who discovered few informational sources while receiving treatment. “You get a cold or the flu and you wonder if you are okay. I still go to the dermatologist regularly for a scan, and the week leading up to that, I can experience a little anxiety.”

Early on, Ken Ulman says, his parents, Diana and Louis Ulman, instilled the importance of making a difference in the lives of others—volunteering the brothers at a local homeless shelter—as well as giving them the optimism and confidence that they could be leaders and problem solvers. (Diana and Louis Ulman, it should be noted, have overcome their own bouts with cancer.) Ken Ulman believes his always-driven brother—who was also Howard County Student Government Association president in high school—“is drawing on those qualities now” as he leads Livestrong through the public-relations crisis related to its founder.

Yetso, who has known Ulman since they were 10, says his pal’s resiliency was apparent on the soccer field long before his battles with cancer. “It was almost like he enjoyed being down 1-0 in a game,” Yetso says. “He is just someone who always responded to a challenge. He would’ve been a great social studies teacher and a coach that won state championships in soccer if he’d stayed on that track. He definitely became more focused [after cancer]—that experience changed him—but at the same time, he’s always been that way.”

As a junior at Brown, Ulman received an unexpected e-mail from Armstrong—who had not yet won his first Tour de France, but had learned of the young soccer player’s struggle with cancer. “I feel as if we are the lucky ones. Nobody can really have the perspective and the focus of a cancer survivor,” Armstrong wrote. “If there is anything I can do to help your cause, please let me know. Otherwise, look after yourself and take care.”

If there’s any doubt about Ulman’s affinity for a challenge, he did a 100-mile Himalyan ultra-marathon several years ago.

Staying in touch via e-mail for two years, Ulman eventually ventured to Texas to meet Armstrong in person during a charity ride.

Armstrong, of course, despite vigorously defending himself (to say the least) against doping allegations for the past decade, has always been the face of his cancer foundation. Raising millions for his cancer nonprofit may have enabled him, in terms of good will, to deflect negative publicity from the persistent doping allegations—as some have suggested. But it’s hard to question Livestrong’s efforts, which do not fund cancer cure research, but aim “to inspire and empower” cancer patients and their families, guiding individuals through the cancer experience and encouraging them to live an active life as a survivor.

Ulman, named president and CEO in 2007, helped develop Livestrong into one of the world’s best-known philanthropic organizations—one that took in $48.5 million in 2012. Not only does Livestrong have a legion of cancer-survivor supporters, including 116,000 donors worldwide last year, it has earned a four-star rating—the highest—from Charity Navigator, an independent charity evaluator.

But in the wake of the doping revelations, he quickly had to make a number of moves to separate the organization’s mission and work from its association with Armstrong. The first, Ulman says, was a commitment to “over communicate” both externally and internally. “We’ve probably had 50 meetings with our staff,” says Ulman, “some an hour, others five minutes.”

Most noticeably, three weeks after Armstrong lost his titles, the Lance Armstrong Foundation dropped the name of the disgraced cyclist from its title, officially changing its name to Livestrong.

Two weeks later, after discussing the issue with Ulman, Armstrong resigned from the board.

Still, he can’t—and probably no one can—replace Armstrong as a celebrity rainmaker. Instead, according to Meg Algren, associate professor of communications at Towson University, the key to Livestrong’s survival must be a renewed focus on its “product”—serving those with cancer diagnoses and cancer survivors.

Marian Stern, a philanthropy consultant and head of Projects in Philanthropy, says Ulman must manage a delicate balance in distancing Livestrong from Armstrong, but believes that Livestrong can survive. She also says Livestrong’s ability to thrive post-Armstrong will reveal more about how the organization was built, in terms of strength and integrity, than any single response to the cyclist’s ongoing crisis. (In April, the U.S. Department of Justice joined a lawsuit alleging fraud related to Armstrong’s U.S. Postal Service sponsorship.)

Ulman already knows that the organization will suffer in terms of its fundraising. He says it has reduced its internal budget for this year by 11 percent, but adds that major grant funders like Nike and Oakley remain on board. To Algren’s point, Ulman is also quick to add that Livestrong is “doubling down” on its mission in 2013, planning to spend more this year—it maintains a $38 million endowment—on its various programs than last.

“We are going to use this opportunity to get the word out about who we are,” he says.

Ulman, who reportedly earned $354,150 in 2011, says he never considered cutting ties with Livestrong. “I feel such a responsibility to the organization and our mission,” he says, remaining grateful to Armstrong in many ways. “Without him and the intensity of his efforts, we wouldn’t have been able help the hundreds of thousands of people that we have.”

In the end, Ulman says, accepting his good friend Armstrong’s mistakes—however gross, including going after former teammates—is akin to dealing with the bad behavior of a family member. “You can be disappointed, frustrated, but you don’t cast a family member or friend aside and overlook what they’ve meant to you and the good things they’ve done.

“It’s ironic,” Ulman says. “We are in the business of survivorship. And all of the tools that we use to help people navigate cancer—now we have to apply those same principles to the organization.”

UPDATE (5/30/13): Nike announced that the company will stop production of its Livestrong line of exercise apparel and gear at the end of this year, terminating a licensing agreement that helped raise $100 million for the cancer foundation, according to Reuters and numerous media outlets. Ron Cassie is following the story here.