How American Airlines’ annual Celebrity Ski event is working to put an end to cystic fibrosis forever.There’s never been a time when Libby Pelican Seamans wasn’t living with cystic fibrosis (CF). And there’s hardly been a time when American Airlines hasn’t been in her life.
Since 1989, Libby, her older sister, Samantha Monson, and their friend Piper Beatty have been among the ambassadors at AA’s annual Celebrity Ski Weekend in Vail, Colo. So far, the event has raised more than $30 million for the Cystic Fibrosis Foundation.
“I’ve had this opportunity to literally grow up in front of hundreds of people, and I can’t explain what that’s meant to me,” Libby, 27, says. “People come up to me and say, ‘I’ve been watching you since you were a little kid.’ That’s pretty special.”
Money from the event, one of the nation’s largest CF fundraisers, has gone toward research and therapies, such as the drugs VX-770 and VX-809, which are undergoing and wrapping trials and might be the best treatment options yet for thousands of people living with the disease. Because cystic fibrosis is considered an “orphan disease” — that is, one that affects fewer than 200,000 people and is less likely to be adopted by the pharmaceutical industry because there are few financial incentives to make new medications — the foundation has had to put hundreds of millions of its dollars toward research.
“We realized pretty early on that the drug industry wasn’t going to put a lot of money and time into manufacturing these drugs if we weren’t also willing to put in money,” says C. Richard Mattingly, the chief operating officer and executive vice president of the CF Foundation, in Bethesda, Md. “We’ve been lucky to have American Airlines as a fundraising force for us because money buys science, and science buys life.”
With the charity event, all three women say they want to change the way cystic fibrosis patients are viewed — and how patients view themselves. “I was told not to go to college, then not to study abroad, then not to go to law school, then not to work at a firm,” Piper says. “But here I am. Fifty years from now, we’re going to have a whole group of old CF’ers looking around, saying, ‘What was I waiting for?’ They need to get out and experience life.”
Mattingly says he has imagined the day when the women come to the ski weekend and cystic fibrosis is finally cured. “It won’t be us begging for money anymore,” he says. “It’ll be all of us saying, ‘We won.’ ”