This article was originally published at the the Christopher & Dana Reeve Newsroom
According to a study initiated by the Christopher & Dana Reeve Foundation, there are nearly 1 in 50 people living with paralysis — approximately 6 million people. That’s the same number of people as the combined populations of Los Angeles, Philadelphia, and Washington, D.C. And that number is nearly 33% higher than previous estimates showed.
What does this mean?
It means that we all know someone — a brother, sister, friend, neighbor, or colleague — living with paralysis. These aren’t strangers. They are only one degree of separation from all of us. But their lives are different. They live with a condition that affects their family life, their ability to work, and their capacity to enjoy even the most routine everyday activities that others take for granted. The Christopher & Dana Reeve Foundation wants to change that.
Identifying the need
In 2004, the Reeve Foundation convened more than 60 of the nation’s preeminent scientists, scholars, health advocates, and experts from the U.S. Centers for Disease Control and Prevention (CDC) and the nation’s top universities, policy centers, and nonprofit health care organizations to identify what was needed to improve the quality of life for people living with paralysis. This Paralysis Task Force quickly discovered that there was insufficient reliable information about the prevalence of paralysis. Without that information, it would be impossible to devise new or evaluate existing policies, programs, and services for people living with paralysis. As a result, the Task Force’s first recommendation for advancing paralysis as a public issue was to build a more robust and comprehensive national knowledge base about it.
Gathering the data
Five years later, that knowledge base has been established, supported by data from a project led by researchers at the University of New Mexico’s Center for Development and Disability (CDD) from 2006 to 2008. Researchers designed and conducted an exhaustive survey of more than 33,000 households across the country. More than 30 experts in paralysis and statistics, including those from the CDC and 14 leading universities and medical centers helped to develop and set the parameters for the study. Today, this study represents one of the largest population based samples of any disability ever conducted.
Download the complete 28 page report from the Christopher & Dana Reeve Foundation