The National Paralysis Resource Center: Christopher and Dana Reeve's Lasting Legacy

The year 2002 was a milestone in Christopher Reeve's life. It was the year his rehab doctor, Dr. John McDonald, went public with unexpected new gains in Reeve's movement and overall health. Concurrently, his wife Dana announced the official founding of the Christopher and Dana Reeve National Paralysis Resource Center (NPRC).

By early September, the nation — especially New York City — was nearing the one-year anniversary of 9/11, a solemn occasion as well as a time of rebirth. It was also the occasion of the publishing of Reeve's second book — Nothing is Impossible — which took a major step in solidifying his lasting legacy of hope.

In early September of that year, it was my good fortune to be invited by a publicist from Random House, Reeve's publisher, into this exciting time of new possibilities to write a cover story for New Mobility magazine. I flew into Newark from Oregon and the next day drove a rental car to Reeve's estate in Pound Ridge, New York, where I was told I could roam free — exploring the grounds, his exercise room and his living room, where I studied photos of his current and past life while his make-up team readied him for a photo shoot that I would direct. This was followed by a three-hour interview and a working lunch together.

During our time together he was open and eager to answer all questions and never asked for editorial review despite his knowing that some New Mobility readers felt the Foundation's initial emphasis on finding a cure for SCI was not helpful to fundraising for daily care. In fact, he was quick to point out his advocacy for the latter.

“We've always had a quality-of-life program (QOL) as part of what the foundation does. We've given out over the last few years an average of about $700,000 a year ... But they're small grants of $5,000, $10,000, and it kills us because we have to say no to so many worthy projects,” he said. “But now [in 2002] we've been given money by Congress through the CDC — $2 million a year for the next three years — to open the Christopher and Dana Reeve Paralysis Resource Center, and give out grants for accessibility, transportation, recreation, assisted living centers, all the things that people need. Also, information specialists will play an important role. …”

He and Dana shared a passion to meet the needs of everyday paralysis survivors.

“This is for people who've been newly injured or people who have been living with a disability for more than a couple of years but were paralyzed for any reason. That's why we're called the Christopher Reeve Paralysis Foundation. Because it's paralysis that might result from a stroke, or MS, brain trauma, ALS, muscular dystrophy, spinal cord injury, Guillaume-Barré, you name it. Any reason why you're paralyzed. We want to reach out to the entire community of people who are paralyzed.”

This all-inclusive focus on the paralysis community transcended spinal cord injury alone and resulted in a major shift in the demographic representation and funding of paralysis research and quality of life programs, thanks to a 2009 University of New Mexico comprehensive study that found paralysis disproportionately affects minority communities and people with lower income, with more than 80% of paralysis survivors facing barriers to receiving necessary medical care. As for spinal cord injuries alone, previous estimates were grossly misrepresented to be 250,000. The new study put the number of those with SCI at more than 1.2 million, about five times higher than previously thought. Moreover, the all-inclusive total of those with all types of paralysis was found to be 5.6 million people.

While the Quality of Life grants program was originally created by Dana Reeve in 1999, it was strengthened by the official establishment of the NPRC in 2002. The Christopher & Dana Reeve Foundation Quality of Life Grants Program has awarded since its inception a total of over $52 million to more than 4,100 projects across the United States of America. Grants have funded nonprofits, tribal entities, and municipalities for a wide array of projects, programs, and services.