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Peter Wilderotter

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To Honor Christopher Reeve's Legacy, We Need to Find Cures for Paralysis

Posted: 10/07/09 03:25 PM ET

This year may long be remembered for the many the cultural, political, and scientific icons of our lifetime who passed on -- Walter Cronkite, Michael Jackson, Norman Borlaug, Farrah Fawcett, Ted Kennedy, and many others. Five years ago this week, we lost another icon, one who managed to bridge these worlds of culture, politics and science. On October 10th, 2004, Christopher Reeve -- Hollywood's Superman who gained world-wide fame as a spinal cord injury (SCI) activist -- died in upstate New York at the age of 52.

His death was a devastating loss not only for his friends and family, but also for all the families who were struggling with SCI. Many worried that -- with the most visible and very human face of SCI gone -- support for research and care might suffer. And there were serious doubts about the future of the Christopher Reeve Paralysis Foundation, doubts that grew stronger less than 18 months later when Christopher's wife Dana died tragically of lung cancer.

As we remember Christopher on the fifth anniversary of his death, it's strikingly clear that the nation is at an historic turning point. The last century will be remembered as one of incredible scientific and social achievement -- from civil rights, women's rights, and the environmental movement, to the moon landing and the creation of the Internet. Will the 21st Century be remembered for creating full freedoms and opportunities for the millions of Americans living with paralysis, or only for decades of disappointment?

Five years after we lost Christopher, there are many reasons for hope. In fact, those years give new meaning to the words of one of Christopher's good friends, the late Senator Ted Kennedy, who said, "The cause endures, the work goes on, the hope still lives, the dream shall never die."

The work of Christopher's foundation (which is now the Christopher & Dana Reeve Foundation) not only goes on, but in many ways, is stronger than ever. For example, we've awarded over $34.5 million for just over 200 research projects that are focused on developing therapies for spinal cord repair since Christopher died. Spinal cord research, which was once described as the "graveyard of neuroscience," is now producing exciting breakthroughs in basic science and new methods of treatment. Just last month for example, Reeve Foundation supported scientists at UCLA and the University of Zurich sparked national headlines when they achieved an historic first: they have made rats with completely severed spinal cords recover to the point that they can step, fully support their own weight, and walk on a treadmill.

For all the progress, however, the stubborn fact remains we have no cure. Moreover, since 2004, some disturbing hidden facts about SCI have finally been brought into public view. They confirm that what Dana Reeve once said -- "when a family member is spinal cord injured, it's like landing on the moon without a road map" -- is still true for far too many Americans.
We now know that the problem of SCI is much more widespread than most experts had imagined. A survey we conducted this spring found that 40 percent more Americans live with paralysis and over five times the number of Americans live with spinal cord injury than previously estimated. With over 5.6 million Americans -- one in 50 -- living with some form of paralysis, everyone knows someone who is affected.

In addition, while many Americans are suffering from the economic meltdown, people living with paralysis face a devastating one-two punch -- low income and staggeringly high health care costs. The survey found that roughly 25 percent of people living with paralysis make less than $10,000 per year. While earning so much less than other Americans, paralyzed people need much more costly health care to live a decent life. Inadequate health insurance or limited geography push even basic supports -- such as ramps, in-home caregivers -- out of their reach. Sophisticated rehabilitation therapies and medical interventions can be even harder to obtain.

Five years after his death, Christopher's life continues to inspire. But our challenge for the next five years is to set the nation on a path to achieving his dream. As the nation debates health care reform, we have to ensure any new system provides independence, access, education and employment for people living with paralysis. We need to promote compassion and understanding rather than intolerance or ignorance from the able-bodied. And we need to build a national movement to realize the hope of finding cures for paralysis in our lifetime.

Only then can we truly celebrate the remarkable life of one of the great icons of our time.