Support Groups, Organizations, Research Centers, and Resources in SCI

SUPPORT GROUPS, ORGANIZATIONS, RESEARCH CENTERS, AND RESOURCES IN SPINAL CORD INJURY

ORGANIZATIONS AND RESEARCH CENTERS

American Association of Spinal Cord Injury Nurses
"...dedicated to promoting quality care for individuals with Spinal Cord Impairment (SCI) ... by advancing nursing practice through education, research, advocacy, health care policy, and collaboration with consumers and health care delivery systems." Includes bulletin board and political update.

American Association of Spinal Cord Injury Psychologists and Social Workers
"...provide for the emotional, behavioral and psychosocial care of those affected by Spinal Cord Impairment (SCI)", and support education and research related to the psychosocial care of persons with SCI.

American Paraplegia Society
"...dedicated to improving the quality of medical care delivered to persons with Spinal Cord Impairment." Promotes research and the review of scientific findings.

American Spine Injury Association
Mission is to promote excellence in health care, education, and research of both acute and chronic SCI, among physicians and other medical professionals.

Canadian Paraplegic Association
"Our mission is to assist persons with spinal cord injuries and other physical disabilities to achieve independence, self-reliance and full community participation."

Canadian and American Spinal Research Organization
"...dedicated to the improvement of the physical quality of life for persons with a spinal cord injury...through targeted medical & scientific research." Includes Quarterly Magazine, Program Report, and Links to other sites.

Center for Applied Special Technology
A nonprofit organization that uses computer technology to expand opportunities for people with disabilities

Center for Paralysis Research
Located at Purdue University, the Center for Paralysis Research was founded to develop and test promising methods of treatment for spinal cord injuries in close affiliation with the School of Veterinary Medicine.

Center for Universal Design (CUD)
Located at North Carolina State University, the Center for Universal Design collects, updates, publishes, and distributes information and provides technical assistance on housing, home modifications for accessibility, and product evaluations for people with disabilities.

Christopher and Dana Reeve Paralysis Foundation
"A merger of the American Paralysis Association and the Christopher Reeve Foundation... encourages and supports research to develop effective treatments and a cure for paralysis caused by spinal cord injury and other central nervous system disorders." Web site has News, Publications, Events and other sections.

Cleveland FES (Functional Electrical Stimulation) Center
In addition to information on the Center's projects, publications, education programs, and employment and training opportunities, this site includes the FES Information Center which has a newsletter, subject bibliographies, and other online resources.

Cure Paralysis Now (CPN)
"This site is dedicated to all who are involved with or affected by spinal cord injury, especially researchers and clinicians in multi-disciplinary fields of study that may relate to the advancement of the healing, or cure of spinal cord paralysis." Includes information on clinical trials and prospective cures in the SCI Research Link, spinal cord injuries, news, related links, and a Chat Forum, where you and researchers and clinicians can talk and exchange ideas and information.

Disabled Sports USA (DS/USA)
The site includes a schedule of events and information on adapted fitness workshops and seminars; internship openings at DS/USA; links to DS/USA Chapter Web sites; access by program/activity, major events, and equipment of DS/USA chapters and regions; and links to other Web sites related to disabilities, including other disabled sports and recreation sites.

Foundation for Spinal Cord Injury Prevention, Care & Cure
FSCIPCC is a non-profit educational group dedicated to the prevention, care and cure of spinal cord injuries through public awareness, education, and funding research.

International Spinal Cord Society
Objectives include the study of SCI, a scientific exchange among members, and support of research, patient care, and education of health professionals involved in SCI. Site includes other international SCI organizations.

Job Accommodation Network (JAN)
Located at West Virginia University, JAN is "not a job placement service, but an international (U.S. and Canada) toll-free consulting service that provides information about job accommodations and the employability of people with disabilities in both English and French. JAN also provides information regarding the American Disabilities Act (ADA)." The site includes free access to online employment and disability resources.

Miami Project To Cure Paralysis
"An international center for spinal cord injury research, University of Miami School of Medicine." Includes information on Marc A. Buoniconti, on the research, newsletter, timeline of achievements, calendar of events, and other information from the Miami Project, as well as links to related sites.

Model Systems Knowledge Translation Center (MSKTC)
Summarizes research, identifies health information needs and develops systems for sharing information for the National Institute on Disability and Rehabilitation Research (NIDRR) model systems programs in traumatic brain injury, spinal cord injury and burn injury.

National Spinal Cord Injury Association
"The mission of the National Spinal Cord Injury Association is to enable people with SCI to make choices and take actions to achieve their highest level of independence and personal fulfillment." Web site includes information about NSCIA, the current week's articles in Disabilities in the News, a "Books on Disability" section, and "The Resource Center", which "features information specifically for people with new injuries."

Paralinks; the Electronic Magazine for People with Spinal Cord Injury.
Paralinks is a "collection of wheelchair users dedicated to providing every conceivable bit and byte of information available to those of us living with SCI in order to improve our lives in every way, no less!"

Paralyzed Veterans of America (PVA)
PVA "was formed following World War II to serve veterans with spinal cord injury or disease. This site is a resource center for all such veterans and for all American with a spinal cord injury or disease, as well as their families and the professional communities who serve them."
This site includes the Spinal Cord Injury Resource Center -- with information on SCI, managed care, new treatment guidelines for SCI and SCI-related conditions, such as autonomic dysreflexia.

Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)

"RESNA is an interdisciplinary association for the advancement of rehabilitation and assistive technologies (AT)". Comprehensive Web site includes AT act of 1998, professional development resources, SIG-10 to identify, develop, implement, and text electrical stimulation methods, and RESNA documents and certified AT practitioners and suppliers.

Rehabilitation Research Center for TBI & SCI
The RRC conducts research to better understand and improve outcomes after TBI and SCI. "This website contains information on the activities of the RRC as well as a large collection of easily accessible online resources, including resource guides, educational materials, newsletters, and bulletin boards."

Shake-A-Leg
"Provides mainstream and complimentary therapeutic services that develop independent living skills for individuals who have experienced spinal cord injury and related nervous system disorders … The magic of Shake-A-Leg lies in peer-to-peer challenge. Participants with varying years of experience with their disability provide each other with a rare wealth of information" in the Body Awareness Therapy (BAT) program.

Spinal Cord Information Page
Site is designed for those who suffer directly or indirectly from spinal cord injuries or diseases of the spine. Contains helpful information such as books, pamphlets, and publication resources; links to online disability communities; a listing, by state, of hospitals and rehabilitation facilities; a research section on treatments and cures; and information on wheelchair set up (manual and power). Additionally, the site has a health issues section that provides information on bladder and bowel management, skin management and much more.

Spinal Cord Injury Network International (SCINI)
"…developed in 1986 to meet the needs experienced by spinal cord injured individuals and their families [by] responding to these needs with information and referral services." These services include: 1-800-548-CORD telephone information and referral; a free video lending library on accessibility, wheelchair use, education/training, employment, sports, etc.; and a library of books, journals, clippings, brochures, and catalogs on SCI-related topics available for a modest fee.

Spinal Cord Society (SCS)
"An international organization for cure, research, & treatment of spinal cord paralysis & related problems" developed in 1978. Site includes headlines from the SCS newsletter on cure research, current SCS research projects, and other information on SCS.

Spinal Injuries Association
"The national organization for people paralyzed by spinal cord injury." Site includes useful information on services in England.

Think First
Think First, the National Brain and Spinal Cord Injury Prevention Program (formerly titled the National head and Spinal Cord Injury Prevention Program) is a public education effort targeting this high-risk group about personal vulnerability and risk taking.

Wheelchair Sports, USA
Previously called the National Wheelchair Athletic Association, this site includes information on upcoming events, news, and a directory of regional sports organizations.