Redefining ‘Cured’

Ever since 1988, wheelchairs have figured into Alan T. Brown's dreams. That was the year his neck was crushed by an ocean wave at a Club Med in Martinique. He was 20 years old, young and single and free, and in one second went from a vibrant college student to a quadriplegic, with no movement below his chest. The dreams began almost instantly, usually with the wheelchair off to one side, Brown standing nearby. "In the beginning, I was convinced I would walk again—1,000 percent," says Brown, now 42, who runs his own public-relations company in Hollywood, Fla. "My old mottos were 'There's light at the end of the tunnel' and 'Never say never.' I did think there was going to be a cure." (Article continued below...)

His dreams have changed over the past 22 years. Oh, wheelchairs still loom, but for the most part, Brown is sitting in them. It's not that he's completely abandoned the hope of ever walking again; it's just that after two decades in a seated position, he's got other issues to reckon with. He has had six major surgeries since his injury. His hemoglobin dropped from 15 to seven, and he began passing out regularly. "I'm in pain 24/7—I feel like my body's on fire," says Brown, who suffered 17 urinary-tract infections last year and a bout with a drug-resistant staph infection. "I've had so many surgeries—you have to pick your battles. How you live your life now, what you do to keep yourself going—that counts more than walking."

His attitude has changed so much, in fact, that this year he and his mother, Fran, overhauled the mission statement of the Alan T Brown Foundation to Cure Paralysis, the nonprofit the family created shortly after Brown's injury. Initially, its goal was to financially support scientific and medical research worldwide with a focus on finding a cure as quickly as possible. And while it is still fundraising today, it has turned away from the hope of an immediate cure.

It was only a few years ago that the wheelchair-bound Christopher Reeve made impassioned pleas about expanding government funding for embryonic-stem-cell research, arguing that patients like him could benefit quickly from scientists' work. But then-president George W. Bush refused to allow government funding of any research that would destroy more human embryos. Reeve died in 2004 from cardiac arrest brought on by a bedsore, a common problem for paralyzed people. And stem-cell research, while still promising, hasn't managed to make Brown and others walk again. And that has left many of the 1,275,000 Americans with spinal-cord injuries rethinking exactly what they might realistically expect in the way of a "cure."

Not that the hope of finding a cure is no longer highly appealing. It's just that the definition of "cure" has radically changed, especially among those who have been injured for more than a few years. After all, if Reeve—who swore that one day he would walk again and had millions of dollars at his disposal—was unable to do so, why would anyone else? So in the summer of 2008, the Christopher and Dana Reeve Foundation changed its slogan from "Go Forward" to "Today's Care. Tomorrow's Cure." "When we first started, our entire focus was to find a cure, to get people walking again," says Reeve Foundation president and CEO Peter Wilderhotter. "As we came to realize that since no injury is completely alike and given the complexity of the spinal cord—there will be no 'magic bullet.' " It is an argument that has raged in many disease-advocacy quarters over the years: when resources are limited, how much should you focus on making daily life better, and how much should you devote to the moonshot?