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One Degree of Separation:
Paralysis and Spinal Cord Injury in the United States

One Degree of Separation: Paralysis and Spinal Cord Injury in the United States (Download the entire 28 page PDF report)

The prevalence and demographics of paralysis and spinal cord injury:

Recommendations: 5 concrete and actionable steps

Introduction
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.

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.

Identifing 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.

A Reeve Foundation Fact Sheet on Adjustment to SCI (PDF)

A Reeve Foundation Fact Sheet on Aging with SCI (PDF)

A Reeve Foundation Fact Sheet on SCI Autobiogs or Biogs (PDF)

A Reeve Foundation Fact Sheet on SCI Chat Rooms (PDF)

A Reeve Foundation Fact Sheet on SCI Research (PDF)

A Reeve Foundation Fact Sheet on SCI Tutorial 101 (PDF)

A Reeve Foundation Fact Sheet on SCI Videos (PDF)

Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.

CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.

Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.

Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.

Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.

Determined 2 HealProvides helpful information for the newly spinal cord injured.

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.

The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.

The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.

National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.

New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.

Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.

Paralyzed Veterans of America (PVA): Spinal Cord InjuryFor more detailed information on the clinical practice guidelines on respiratory management with spinal cord injury you can request booklets from the Paralyzed Veterans of America. These booklets also provide guidelines on proper weaning from a ventilator.

SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.

Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.

United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.

U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

Check out programs in your area on our one-of-a kind online searchable Quality of Life program database. You can search by location or topic. GO

The information provided in the Paralysis Resource Center was supported by Cooperative Agreement number 1U59DD000838-01 from the Centers for Disease Control and Prevention (CDC). Its contents are solely the responsibility of the Reeve Foundation and do not necessarily represent the official views of the CDC.