AUSTIN (KXAN) — In February 2014, LIVESTRONG CEO Doug Ulman climbed Mt. Kilamanjaro with a group of cancer survivors and their families after what had been a very long year.
“[It] was transformational for me personally, and it was a reset for me,” said Ulman. “We can’t allow ourselves to be distracted by the past. We have to honor the past and respect the past, but we have to look to the future.”
But the past year and a half has been difficult for the LIVESTRONG Foundation. In January 2013, LIVESTRONG founder Lance Armstrong admitted he used performance-enhancing drugs in all seven of his Tour de France victories, something he denied publicly for years. Ulman says he knew things would get difficult for LIVESTRONG even before that admission.
“I think the reality was in October of 2012, when it became clear that this report was coming out from this sanctioning body in the cycling world — or in the sports world. It became pretty obvious that we now knew the truth,” Ulman remembered. “And at that point the organization had to do anything and everything to put the focus on the mission and the organization at the forefront, and that wasn’t always easy. But that’s what we’re in the business of doing, serving people with cancer. We could never lose focus on that sort of North Star.”
Serving cancer patients and their families is something LIVESTRONG has been doing since its inception in 1997. Since then, the organization has raised $525 million for cancer patient programs and research, serving 2.8 million people battling cancer.
The Armstrong Effect
Since 2010, when rumors about Armstrong’s doping gained momentum, donations to LIVESTRONG started to fall off. In the last four years they have fallen nearly 40 percent, dropping by more than $12 million. Overall revenues were also down more than 40 percent, $19.5 million, from 2012 to 2013.
“This organization for so long enjoyed this tremendous visibility and this cultural relevancy,” Ulman said. “As a result of the events that have unfolded, we may have lost some of that, or there may have been a sort of negative reaction to who we are and what we do.
“The reality is, when people actually learn who we are and what we do, they’re incredibly generous with their time, their talent and their treasure…we’ve got to do a better job of communicating that to people,” Ulman added. “But quite honestly, as hard as last year was, I actually thought it would be worse.”
Anticipating the storm, Ulman says the organization did make cuts to some programs, such as ending an Austin-area pilot program that would provide transportation for cancer patients to-and-from doctors and treatment. It also put on hold a navigation center expansion in Chicago, a navigation center opening in Los Angeles and a campaign to reduce stigma faced by cancer patients in China.
But Ulman believes the worst is behind them.
“In the last three to four months, things are changing,” Ulman said. “People are reaching out. We have new first time supporters. We have companies coming to us saying ‘let’s partner, we love what you’re doing.’ And people are learning who we are and what we do.”
After ending a $100 million business relationship with Nike, LIVESTRONG now has a new corporate partner in Car2Go. MotoGP brand “AGT Rea Racing” recently announced LIVESTRONG as its new charity partner. And there are new individual donors, like Austin attorney Adam Loewy who pledged $25,000 to the organization.
“When you look at organizations like this, the simple truth is, they need money,” Loewy said. “And if they do not get money, they cannot deliver the services to the people that need them.”
He was moved to help after a lunch with Ulman and because of his own grandmother’s long battle with skin cancer.
“I just have very vivid memories of my grandmother being very lonely and I just wish this organization existed at the time,” Loewy said.
Ulman believes now is the time to focus on spreading the message about what LIVESTRONG does to help cancer patients, like the Foundation’s Navigation program.
“Free service on the telephone, on the Internet, or in person here in East Austin, or in Chicago,” Ulman said, “for anyone impacted by cancer to come get psychosocial support, clinical support, financial support. Anything you can imagine as it relates to this cancer experience, and that’s hard to do.
“But if you are the individual or the family dealing with this disease, you are so relieved to find this program and know that it’s free and accessible to you wherever you are in the journey,” Ulman added. “That’s by far the most important thing that we do.”
LIVESTRONG also has a partnership with the YMCA, where cancer patients and their families can participate in free physical activity programs or work with a trainer.
“We developed this program and went to a partner like the Y and it’s now in 300 different locations across the country, but yet it should be in a thousand,” Ulman said. “Everybody should have access to that type of program.”
Patient Navigation Center
Austinite Steve Wright learned about his lung cancer in December 2011. His children attend school across the street from the LIVESTRONG building, so one day Wright went in to the Patient Navigation Center.
“There was a drug that had just come out of testing that I could use,” Wright said. “Would we have gotten to that point without LIVESTRONG? I don’t know. Would I have gotten to that point more quickly? No.”
“I really believe that they saved my life,” Wright added. “But that’s only part of what they did because once they saved it, then they helped me get it going again.”
LIVESTRONG’s Patient Navigation Center also provided emotional counseling for Wright and his family.
“We also did men’s groups, we did nutrition counseling, we did financial counseling” Wright said. “They tried to find money for co-pays for things that were coming up. There was no charge for anything that LIVESTRONG did for me.”
LIVESTRONG recently launched “The Big C” competition, a global competition to generate innovations that improve the daily quality of life for people affected by cancer now. “The Big C” is offering seed funding to 60 ventures, including a $25,000 grand prize to be awarded during the Team LIVESTRONG Challenge in Austin in October.
Ulman says he is also encouraged by the building of the new Dell Medical School in Austin, which will bring an influx of medical minds to town.
“With a new medical school and all that brings, we feel like there is a once in a lifetime opportunity to ensure that every single person in Central Texas gets access to patient-centered, high quality cancer care.”
Despite its challenges in 2013, LIVESTRONG served 325,000 patients and their families. The Foundation is considered one of the top-rated nonprofits in the nation by external watchdog groups, including the Better Business Bureau Wise Giving Alliance, National Health Council, American Institute of Philanthropy, Philanthropedia and Charity Navigator.
“We’re here, and we’re open, and we’re a resource, and we’re not going anywhere,” Ulman said. “There’s a lot of people out there who expect to see us fade away, and that is definitely not the case.”
Of every dollar raised for LIVESTRONG, 82-cents goes to actively support the organization’s cancer programs and initiatives. The industry standard is 75 percent.