Bicycles, Roses, and Survivors
The Lance Armstrong Foundation and the spirit of Its founder
It was a warm night in December 1996. Three tan, fit men in their late 20s sat around a table at Z'Tejas on West Sixth, focusing their attention on the pale, puffy-faced, bald guy sitting with them. A baseball cap covered the baldness, but anyone looking at him would guess that he was very sick. He had the bloat and pallor that are often side effects of chemotherapy.
Just weeks before, Lance Armstrong had learned that he had an advanced form of testicular cancer which had spread to his abdomen, lungs, and brain. One of his testicles had been removed, lesions had been scraped from his brain, and he had endured long hours while poisons dripped through an IV into his chest, targeted to kill the cancer cells that still remained.
"I just want to do something," Armstrong said, "to make sure that nobody else has to go through what I went through." The others nodded, and the small group began discussing how they might raise money to fund a foundation that would promote education and awareness about testicular cancer. Armstrong admitted that before he was diagnosed he was "the poster child for ignorance about cancer." He was no longer ignorant he had painstakingly educated himself and now he wanted to share his knowledge.
The impetus for this particular gathering was a get-well card that Armstrong had received from Bill Cass, a shoe designer for Nike who was also a talented illustrator. His card depicted Armstrong riding his bike through the halls of a hospital with his gown flying behind him an IV still attached. The card celebrated the fact that after all he'd been through, Lance still could ride a bike.
The four men Armstrong, his agent Bill Stapleton, and his best friends, John Korioth and Bart Knaggs batted around the idea of a cycling event which could raise money. Someone brought up Armstrong's annual Race for the Roses an informal Valentine's Day race for Armstrong's cycling buddies that followed a torturous 100-mile loop from his house out to Dripping Springs. The winner got a dozen roses. Korioth suggested that they put on a ride over the same course. He had been involved in the events business for years and was working a job that gave him the flexibility to coordinate such an event. He figured that they could probably find some sponsors to underwrite the costs, and get local bike shops to do the road support. So with Korioth as director, the new Ride for the Roses was born it would be the first fundraiser for the newly formed Lance Armstrong Foundation.
When somebody achieves superstar status and universal name recognition in the way that Lance Armstrong has over the past few years, it is difficult to imagine the "before." But in early 1997, Armstrong was virtually unknown outside the cycling community especially outside Austin. He had been the preeminent American cyclist for years before he got sick but cycling was mostly a European sport, one that many Americans equated with the likes of polo or cricket. Unlike the Tiger Woods or Magic Johnson foundations, the Lance Armstrong Foundation was not self-funded by a millionaire at that time Armstrong didn't even have a job, much less millions of dollars. The LAF was a shoestring operation, relying on the hard work and loyalty of a small group of friends.
Korioth set up an office in the second bedroom of his condo and hired another friend, Elizabeth Kreutz, to help. Over the next few weeks, he began the process of trying to find sponsors for the ride. He made call after call: "I'd say, 'I'm with the Lance Armstrong Foundation' and most people would say, 'Who?' So I'd explain that he's a cyclist that had survived cancer and only then would there be a dull ring of recognition." But Korioth kept making calls and eventually found enough sponsors to underwrite the thousands of dollars in costs associated with the initial race.
It was an organizational nightmare. Although Korioth had considerable experience putting on events, he had virtually no staff, just a few part-time contract workers, and a handful of volunteers. There were too few people and too much to do. On that March 1997 morning, more than 2,000 cyclists showed up, hundreds more than expected. The rest stops ran out of food and water no small thing, given that many of the cyclists were riding 100 miles in 90-degree heat and 90% humidity. But the routes through the Texas Hill Country were beautiful, carpeted with bluebonnets. Most of the cyclists were willing to forgive the organizers for the various mishaps, in part because it was a first-time event, but mainly because Armstrong rode in the middle of the pack and allowed hundreds of amateur cyclists to tell their friends, "I rode with Lance Armstrong and kicked his butt." The ride profited about $20,000; not bad for a first-time event, but not nearly enough to fund the cancer research, awareness, and educational programs that Armstrong envisioned.
Armstrong and his buddies realized that if they wanted to be able to develop professional education and awareness programs, they needed to create a foundation structure and put together a real board of directors. Austin's mayor at the time, Kirk Watson, was himself a testicular cancer survivor and an obvious choice. Olympian distance runner Francie Larrieu-Smith lived nearby and had been involved in the Susan G. Komen Foundation, a similar nonprofit that raised money for breast cancer research, so she was invited. Lee Walker, president of Dell Computers in its formative years, was a person who knew everybody in town and also how to get things done his presence on the board would help attract the kind of supporters needed to make the foundation a success. So the men were pleased when Walker agreed. But they still needed somebody who had the time, energy, and expertise to direct and drive the board and foundation.
That somebody was discovered in the "Austin is such a small town" way that things often happen here. One day, Armstrong was getting a massage, and Korioth was sitting on a couch in the reception area, waiting for him to finish getting dressed. He asked the massage therapist, Marion Burch Cimbala, if she knew of anybody that they should add to the board. "Just one person," she replied. "Jeff Garvey." Garvey was an avid cyclist and a partner at Austin Ventures, one of the largest venture capital firms in the southwest. Garvey had also lost both his parents to cancer. He was beginning to get involved in philanthropy and was contemplating early retirement, so Burch offered to set up a meeting.
Armstrong went over to Garvey's house for lunch. Over "a couple of Kitchen Door sandwiches" Armstrong recalls, "I explained my idea." At that early juncture, the purpose of the foundation was vague "something to do with cancer education" but Garvey was drawn to the idea of getting involved in a local, cancer-related project. There was also an immediate bond between Garvey and Armstrong. Although he wasn't a competitive cyclist, Garvey was proud of the fact that he was pictured riding up Mt. Bonnell in The Best Bike Rides in Texas, so he brought the book out to show Armstrong. "How'd they do that, trick photography?" Armstrong asked. So the bantering began between the two men, as though they had known each other for years. They met a few more times, and before long Garvey was the new chairman of the Lance Armstrong Foundation.
There are two major procedural steps in the success of any nonprofit foundation: raising the funds, and then giving them away. Garvey would be the board member most focused on raising the LAF's money, and Dr. Steven Wolff would be the one to figure out how best to give it away.
Money and Mission
Wolff, an oncologist and avid cyclist, had initially contacted Armstrong when the cyclist was first diagnosed with cancer, suggesting that he obtain a second opinion from the physicians at Indiana University before committing to a course of treatment. Armstrong took his advice and the two stayed in touch. Wolff agreed to be on the board, heading the scientific advisory committee that would oversee the distribution of grant funds. Wanting to be more than simply an advisor, Wolff took a leave of absence from his medical practice and teaching responsibilities at Vanderbilt University Medical Center in Nashville and moved to Austin to help out full time at the foundation as a volunteer. He established a system for requesting grant proposals and began to assemble a library of information on cancer awareness, early detection, and treatment.
For the first two years, the foundation's fundraising was completely event-driven. The Ride for the Roses and its Peloton Project (individual cyclists raised money through pledges for miles ridden at the Ride) were the main source of foundation funds. A gala dinner and silent auction had been added during the Ride weekend, but the money it generated was still based on the event and sales of donated items, rather than on tapping donors for independent donations.
Garvey wanted to broaden the fundraising base in order to reach the goal of raising millions, rather than thousands, of dollars. He hired a consultant who recommended that the foundation move away from its reliance on the cycling community cyclists aren't known to have much money and focus instead on big money donors. Through their businesses or professions, Garvey and other board members had many contacts with affluent people in Central Texas. The consultant recommended that fundraising efforts be refocused toward those potential donors. They created the "Founder's Circle" a select group who committed to donating $500,000 over a period of five years. Armstrong, Garvey, and Walker all ponied up right away and within a short period of time, there were more than 20 Circle members, establishing a stable source of income beyond the annual cycling events.
Garvey also sought to reevaluate the foundation's mission. "What I found remarkable about Lance Armstrong was not that he had gotten testicular cancer, but that he had survived it," Garvey says. So the mission of the LAF evolved from focusing on research, education, and awareness about testicular cancer to focusing on "enhancing the quality of life for those living with, through, and beyond cancer" what has since become known as "survivorship."
In those first few years, the foundation experienced inevitable growing pains. The major shift in both the fundraising focus and mission of the foundation that Garvey and his consultant had engineered led to John Korioth resigning as executive director during the summer of 1998. Korioth's accomplishment without resources, expertise, or staff, he'd helped raise over half a million dollars, and grant tens of thousands of dollars for cancer-related research was the base upon which the foundation would grow for years and years to come. But his resignation caused a rift in his friendship with Armstrong they stopped speaking to each other, and for a time Korioth would have nothing further to do with the foundation. (The two have since reconciled.) Many of the cyclists who had supported the foundation in the early days felt a bit betrayed by the changes Garvey and the board were making; there didn't seem to be a place for the cyclists in this new "upscale" foundation. Despite these problems, Korioth's replacement, Karl Haussmann, shepherded the Ride for the Roses through the next few years and reached an important benchmark: In 1999, the events raised almost a million dollars. Many nonprofit organizations toil for decades before they raise a million dollars. The LAF did it after just three years.
And then Armstrong won the Tour de France.
Victory and Magnanimity
Nobody except perhaps Armstrong, his coaches, and teammates expected him to win the Tour in his first year back as a professional cyclist. Winning catapulted him into the realm of superstar. His story had all the elements of the perfect American drama: success created from hard work after a battle with cancer. Because of the speed with which Armstrong went from cyclist to celebrity, the foundation was woefully underprepared for the onslaught of both donors and requests for grants. This sudden rise in demands on the foundation caused a great deal of tension between the staff and the board. Board members, especially Garvey, were extremely active in the day-to-day operations of the foundation. The staff was working long hours for very little money because they believed in Lance and the cause, but some believed that the board didn't appreciate their efforts. In the fall of 2000, Haussmann resigned, followed shortly by two other staff members. Armstrong returned to Austin to find the LAF in a bit of a shambles.
So Armstrong did what he had to do. He had long talks with the previous staff members, a heart-to-heart discussion with Garvey, and then he set out to ensure that staff were hired who would get the foundation moving forward again. "There is no doubt that was a difficult time for the foundation," Marion Burch Cimbala recalls, "but what emerged from the challenge is truly extraordinary."
Garvey and the board quickly began to hire more staff and develop systems to capitalize on the increase in donations. For a period of about two years, Garvey took on the role of executive director without pay to ensure that the foundation got back on track. They hired Doug Ulman a three-time cancer survivor himself to create new ways to support survivorship with foundation grants. Ulman quickly created a community grant program, giving small grants to community groups for survivorship programs. These were distinct from the scientific research grants, which have funded everything from "Radiation Dosimetry for Childhood Cancer Survivors" to "Unexamined Issues for Survivors and Their Spouses After Blood and Marrow Transplantation." The LAF was raising millions of dollars, and Ulman was doing his best to give it away to worthy programs.
It would be easy to attribute the huge growth in the LAF after July 1999 simply to Armstrong's winning and winning and winning the Tour de France. But that would underestimate the breadth of the support that the foundation has garnered beyond cycling. Armstrong's instant celebrity gave him a podium for promoting the LAF, but simply being a celebrity is not enough. The Michael J. Fox Foundation and the Christopher Reeve Foundation have major star power behind them too, but neither seems to have garnered the wide range of supporters of the LAF, currently reflected in the estimated 15 million people wearing Live Strong wristbands (see "Millions of Wrists," below).
Understanding the swift success of the LAF must start with Armstrong himself. He is bright, charismatic, attractive, brazen, and always competitive fiercely loyal to his friends and, as his cycling career has amply documented, utterly dedicated to accomplishing his goals. According to Garvey, "Lance has an uncanny ability to surround himself with good people, and those people bring other good people on board."
Armstrong is also seen as a man's man, who overcame a man's disease testicular cancer is one of the most prevalent cancers for men between the ages of 20 and 35. He took a visibly public role at a time when there were few other prominent male spokesmen for cancer and virtually no young athletes speaking out about it. He saw the awe that his survival had engendered, and he was willing to put in the hours of interviews with journalists, make the phone calls, and send the letters and e-mails to spread the foundation's message. Women had the Susan G. Komen Foundation, still the most important advocacy group for breast cancer research and survivorship. There was no equivalent for testicular cancer, and the LAF stepped into that void and then broadened its mission while maintaining Armstrong's extraordinary story as its underlying inspirational narrative.
The scope of support and success of the LAF now transcends its initial focus on men and testicular cancer survivors. Armstrong has grown comfortable with the role of hero, and his story seems to resonate with scores of people of all ages, genders, and backgrounds. Cancer survivors everywhere found encouragement not only in his survivorship, but in the way that he stayed accessible. During the formative years of the foundation, Armstrong personally wrote back to the survivors who e-mailed. He phoned hundreds of people during their chemotherapy just to provide some brief support. He visited cancer wards especially pediatric wards in hospitals all over the country. And he did it without cameras or PR people following him. The word got out within the cancer community: This guy's for real, he isn't here for the publicity. Even now, when his celebrity status imposes enormous obligations and petty aggravations (like security guards), Armstrong still keeps in touch personally with many cancer patients and survivors.
It is that compassion, accessibility, and charisma that led Harold Varmus, head of the National Institutes of Health, to declare, "Lance Armstrong is arguably the most powerful cancer survivor ever." The success of the Lance Armstrong Foundation which now has 40 employees and raised over $11 million last year and is expected to double that amount this year is a consequence of Armstrong's personal influence and inspiration, but also testifies to the ubiquity of cancer.
In late July of this year, Lance Armstrong once again rode into Paris wearing the yellow jersey distinguishing the winner of the Tour de France. He thereby joined not only an elite group of professional cyclists he is the first cyclist ever to win the Tour six times he proved yet again he is a survivor. He also again proved wrong his critics: Those who said that he was too old, that there were too many other excellent competitors, that he couldn't continue to test negative for banned substances. Armstrong persevered. He seems to like the battle, even enjoy the difficulty and the suffering of this marathon endurance test. But then, compared to the central medical crisis Armstrong has endured in his life, this is ... well, only a bicycle race.
One Among Many
The previous fall, at the conclusion of the 2003 LAF gala dinner and auction, emcee Chris Fowler of ESPN asked all the survivors in the room to stand. A couple dozen of the crowd of 700 did so. Then he asked anyone who had lost a loved one to cancer to join the survivors in standing. Almost half the room then rose. Finally Fowler asked anyone who knew someone with cancer to stand. Every single person in the room was then standing, some with tears streaming down their faces, some with heads bald from chemo or garish scars from cancer surgery. But all with some connection, not only to cancer, but to the foundation which was facilitating progress in survivorship.
Perhaps that helps explain why Armstrong's story resonates so deeply, and why so many different people support the work of his foundation cancer touches almost everyone in one way or another, and Armstrong has shown that the support goes both ways. When Lance Armstrong has stood on the podium in Paris each July, wearing the yellow jersey of the winner of the Tour de France, he has also been standing for everybody who has ever been touched by cancer. And they continue to stand with him.
Rita Radostitz was a part-time employee of the Lance Armstrong Foundation in 1999, and has volunteered on LAF projects before and since.