Spinal Cord Injury: A NARIC Resource Guide for People with SCI and Their Families From the National Rehabilitation Information Center March 1994 Copyright © 1995 KRA Corporation _________________________________________________________________ Table of Contents [1]Introduction Suggested resources: [2]General [3]Bowel and Bladder Care [4]Children [5]Personal Care/Daily Living [6]Exercise [7]Sex and Reproduction [8]Skin Care [9]Spasticity [10]Statistics [11]Wheelchairs and Other Assistive Devices [12]Wheelchair Standards [13]Funding Sources for Assistive Technology [14]How to Get More Information on Assistive Devices [15]Research to Find a Cure for Spinal Cord Injury [16]Database Searching [17]Sports and Recreation [18]SCI Organizations [19]Toll-Free Information Numbers [20]Professional Organizations [21]Other Organizations [22]Periodicals of Interest [23]Government-Sponsored Research [24]Private Organizations that Fund Research [25]About this Document _________________________________________________________________ Introduction Each year in the United States an estimated 6,000-8,000 people become spinal cord injured. People who recently have sustained a spinal cord injury (SCI) often have many questions about what happens when a spinal cord injury occurs and where to get the information needed to live with a spinal cord injury. After an injury occurs, the person with SCI must relearn many everyday activities, depending upon the level and extent of the injury. The purpose of this resource guide is to identify some of the major publications, organizations (books, magazines, and newsletters), and other resources assisting people with SCI (from the point of injury onward, focusing on specific aspects of SCI). In 8 pages it is not possible to solve specific dilemmas, but it is possible to provide a solid introduction to the resources that currently do exist. Suggested Resources General Introduction to SCI Spinal Network: The Total Resource for the Wheelchair Community. Maddox, S. Boulder, CO: Spinal Network, 1991. 372 pp. Available from: Spinal Network, P.O. Box 4162, Boulder, CO 80306. 303/449-5412. Cost: $37.95 (plus $5.00 shipping), $39.95 (plus $5.00 shipping) for the edition that lays flat when opened. One of the most comprehensive resources available for the SCI community, this book offers detailed medical information on spinal cord injuries, covers sports and recreation, travel, substance abuse, sex and romance, fashion, survival on the farm, horticulture, fundraising, history of wheelchairs, cushions, driving, disability rights, legal and financial issues. Also included is a list of resources for the person with SCI, including associations, assistive groups, contacts, state groups, and Canadian provincial groups. Personal perspectives on SCI and many references for further information are included. Spinal Cord Injury: A Guide for Patient and Family. Phillips, L, et al. New York, NY: Raven Press, 1987. 290 pp. Available from: Raven Press, 1185 Avenue of the Americas, New York, NY 10036. ISBN 0-88167-275-0 (Order Code 1732); 212/930-9500. Cost: $39 (hardback); $17 (paperback). This practical guide addresses in straightforward laypersons' terms the many medical, social, and psychological issues that face people with spinal cord injuries and their families. Coauthored by physicians, lay experts, and a rehabilitation engineer who himself sustained a spinal cord injury, the book clearly explains how spinal cord injuries occur, what happens to the body after injury, and where to go for help. It also describes research being conducted to improve function after a spinal cord injury. A glossary of terms and a list of publications are included. How to Live with a Spinal Cord Injury. Available from: Accent on Living, P.O. Box 700, Bloomington, IL 61702. 800/787-8444. Cost: $6.95 (plus $.85 shipping & handling). Written by a person with paraplegia, this guide includes information about dealing with disability on a day-to-day basis. An Introduction to Spinal Cord Injury. Available from: Paralyzed Veterans of America (PVA), 801 Eighteenth Street NW, Washington, DC 20006. 800/424-8200, 202/872-1300. Cost: free. This pamphlet provides basic information about spinal cord injury, suggested additional readings, and a glossary of terms. Factsheets on Spinal Cord Injury. Available from: National Spinal Cord Injury Association, 600 West Cummings Park, Suite 2000, Woburn, MA 01801. 800/962-9629; 617/935-2722. Cost: free to members; $3 per Factsheet to nonmembers. The National Spinal Cord Injury Association (NSCIA), a national membership organization for people with spinal cord injuries, publishes a series of fact sheets on spinal cord injury. Topics include: What is Spinal Cord Injury?, Spinal Cord Injury Statistical Information, What's New in SCI Research?, Sexuality After Spinal Cord Injury, and many other topics. A complete publications list describes the NSCIA Factsheets series as well as other publications available through the association. Bowel and Bladder Care Bowel Management: A Manual of Ideas and Techniques. Raymond C. Cheever and Charles D. Elmer, R. P. T. Available from: Accent on Living. (Contact information above.) Cost: $3.50 (plus .85 shipping & handling). This booklet includes considerations such as frequency, timing, diet, water intake, exercise, use of laxatives, and successful approaches used at several different rehabilitation centers. Urinary Tract Infections. Available from: the Research and Training Center (RTC) on Independent Living, University of Kansas. Life Span Institute, 4089 Dole, Lawrence, KS 66045-2930. 913/864-0592. Cost: $2. Urinary Tract Infections was developed by the RTC on Independent Living at the University of Kansas with grant funds from the Paralyzed Veterans of America Education and Training Foundation. This 12-page pamphlet explains urinary tract care and treatment in lay language. It describes alternative bladder-emptying methods and discusses problems that can arise in someone with a spinal cord injury. Overcoming Bladder Disorders. Rebecca Chalker and Kristene Whitmore, MD. Available from Accent on Living. Cost: $11 (plus $1.25 shipping & handling). This fact-filled guide draws on the latest research, surveys, and first-person accounts to provide up-to-date information on diagnosis, treatment, and prevention of urinary system disorders. Children Rebecca Finds a New Way: How Kids Learn, Play, and Live with Spinal Cord Injuries and Illnesses. (1994). Available from: In Touch with Kids Network, National Spinal Cord Injury Association (contact information above). Cost: #3.50; free to children with SCI. Written for children to help them understand that others with spinal cord injuries have the same needs. Speedway Sam: A Book About Spinal Cord Injury for Children. Available from: UAB Spain Rehabilitation Center, RTC Training Office, 1717 - 6th Avenue South, Birmingham, AL 35233-7330. 205/934-3283. Cost: $3.50. A book designed to help children learn about SCI, SCI prevention, and positive attitudes toward people with disabilities. Can be used as a coloring book. Personal Care/Daily Living for People with Spinal Cord Injuries Yes, You Can! Available from: Paralyzed Veterans of America (PVA). (Contact information above). Cost: $9.50 (plus $2.50 shipping & handling). Available in English or Spanish. Yes, You Can! is an easy-to-read guide to self-care for people with spinal cord injuries. Prepared by the staff of a spinal cord injury rehabilitation center, this guide covers issues such as attendant care, bowel and bladder management, psychosocial adjustment, recreation, skin care, and driving. It is available in English or Spanish. Exercise Nancy's Special Workout. Available from: Avenues Unlimited, Inc. 1199 K Avenida Acaso, Camarillo, CA 93012. 800/848-2837; 805/484-8138. Cost: $39.95 This video features occupational therapist Nancy Sebring who gears the program to wheelchair users_children and adults. The 45-minute routine starts with a warm-up, moves to a vigorous cardiovascular workout, and ends with a cool-down. Keep Fit While You Sit. Available from: Available from: Avenues Unlimited, Inc. (Contact information above.) Cost: $29.95 ($2 of each sale is donated to the American Paralysis Association). This video is for more advanced workouts than the previous two. It has been designed to increase circulation, respiratory capacity, flexibility, muscle tone, and strength. This video is endorsed by the American Paralysis Association. Anybody Can Sit and Be Fit. Available from: Accent on Living. Cost: $19.95 (plus $2.50 shipping & handling). Martha Rounds has had 30 years in the field of health and fitness. She designed a 20-minute routine for people who need to sit while exercising. The program involves the arms and upper body and some leg lifts to help burn calories, increase circulation, and relieve muscle tension. Sex and Reproduction Sexual Adjustment: A Guide for the Spinal Cord Injured. Available from: Accent on Living. Cost: $4.95 (plus $1.25 shipping & handling). This guide contains information about sexual adjustment for males with paraplegia. Mother to Be: A Guide to Pregnancy and Birth for Women with Disabilities. Available from: Accent on Living. Cost: $24.95 (plus $2.50 shipping & handling). This handbook gives the reader a sense of what to expect based on the experiences of women with a variety of disabilities. The book discusses finding the right medical care, nutritional requirements, labor, delivery, and more. Love--Where to Find It, How to Keep It. Elle Becker, MA. Available from: Accent on Living. Cost: $6.95 (plus $1.25 shipping & handling). This self-help book includes information about how to meet other single people, communication skills, dating. Sexuality Reborn. Available from: Kessler Institute for Rehabilitation, 1199 Pleasant Valley Way, West Orange, NJ 07052. Attn: Education Department. 800/435-8866. Cost: $39.95 (plus $8 shipping & handling). Sexuality Reborn, (1991), a videotape about sexuality after spinal cord injury, features four couples who talk about and demonstrate techniques they have found helpful for sexual expression. Due to the nature of the material, audiences should be prepared for sexually explicit scenes and frank discussions of sensitive topics. It was produced with grant funds from PVA's Education and Training Foundation at the Kessler Institute for Rehabilitation and features Ben Vereen as the special guest narrator. Enabling Romance: An Illustrated Guide to Romantic and Sexual Relationships. Available from: Accent on Living. Cost: $22.50 (plus $2.50 shipping). This guide was written by a man with a disability for his nondisabled wife. Skin Care Pressure Sores. Developed by the RTC on Independent Living at the University of Kansas with grant funds from the Paralyzed Veterans of America Education and Training Foundation. Available from: the RTC on Independent Living. (Contact information above.) Cost: $2.50. Practical information about how to recognize problem spots, how to prevent them, and how to treat them. Spasticity Managing Spasticity. Carol L. Goodman, MSN, CRRN, and Kelly Hill, RN. Paraplegia News, February 1992, pp 24-27. Available from: PVA Publications. 2111 East Highland Avenue, Suite 180, Phoenix, AZ 85016-4702. 602/224-0500. Current price is available from the publisher. Statistics Statistical Findings of the Regional Spinal Cord Injury System. Available from: NARIC: Rehab BRIEF, 6(3), 1983. Wheelchairs and Other Assistive Devices How to Select and Use Manual Wheelchairs. (1993). Available from: Rehabilitation Press, P.O. Box 380, Topping, VA 23169. Cost: $12.50. Selection of the most appropriate wheelchair and seating system can be simplified if one has information about factors to consider and products on the market. This guide helps new wheelchair users select a wheelchair with the right dimensions and seating system depending upon the degree of disability, goals of the user, and the environment in which the chair will be used. The book also provides information about proper use and maintenance of wheelchairs. ABLEDATA Resource Guide for Wheelchair Information. Available from: ABLEDATA, 8455 Colesville Road, Suite 935, Silver Spring, MD 20910-3319. 800/227-0216 (V), 301/588-9284 (V), 301/495-5626 (TT), 301/597-1967 (fax). Cost: $5. Funding Assistive Technology Fact Sheet, Informed Consumer Guide to Wheelchair Selection, Manual Wheelchairs Fact Sheet, Powered Wheelchair Fact Sheet, Wheelchairs for Children Fact Sheet. Choosing a Wheelchair System. (1990). Available from: Department of Veterans Affairs, Veterans Health Services and Research Administration, Washington, DC 20420. Clinical Supplement #2, Journal of Rehabilitation Research and Development, March 1990. Cost: free. Several years ago the U.S. Department of Veterans Affairs Rehabilitation Research and Development Service (Rehab R&D) issued Clinical Supplement #2 entitled "Choosing a Wheelchair System." This resource was written by people with disabilities who have selected wheelchairs for many years, health care providers who prescribe wheelchairs, and researchers and engineers who participate in the development of new wheelchair designs. Sports 'n Spokes. Available from: PVA Publications, 2111 East Highland Avenue, Suite 180, Phoenix, AZ 85016-4702. 602/224-0500. Price and availability can be checked by phone call. Sports 'n Spokes, a bimonthly publication for active wheelchair users, publishes an Annual Survey of Lightweight Wheelchairs in their March/April issue each year. The most recent survey (March/April 1994) includes a description of how wheelchairs are tested in order to comply with recently-issued American National Standards Institute (ANSI) standards. Also included are photos of a variety of everyday, sports, and junior-sized lightweight wheelchairs from different manufacturers; comparative sizing information; warranty information; delivery time; and retail price. Back issues of the magazine sometimes are available; so are reprints of specific articles. Homecare Magazine and TeamRehab Reports also publish an annual Wheelchair Focus that provides similar comparative information. It is published once a year (in the spring). Available from: Miramar Publishing, 6133 Bristol Parkway, P.O. Box 3640, Culver City, CA 90231-3640. 800/543-4116; 213/337-1041. Price and availability can be checked by phone call. Wheelchair Standards ANSI recently approved a complete set of standards for wheelchairs. These standards consist of standard methods of disclosing information (example: How do you measure the width of a seat? Inside to inside of each tube, or width of a cushion, or through some other measurement?); and standard test methods to test a chair's strength, "tip-ability," turning radius, and so forth. The complete set of standards are available from RESNA for $180. These standards probably would be of interest only to manufacturers and others who are going to conduct testing themselves, as they are very technical documents. However, some good summary documents are available that describe the standards for therapists and laypeople. To date, very few manufacturers have used the standards routinely to test and disclose information about their products. However, once this kind of information becomes more readily available, it can be used by consumers to make intelligent purchasing decisions. Available from: RESNA, 1700 N. Moore Street, Suite 1540, Arlington, VA 22209. 703/524-6686. Cost: $180 for the complete set; $15 for individual standards. Funding Sources for Assistive Technology Funding for wheelchairs or other assistive devices is dependent upon an individual's eligibility for medical, social services, income support, or vocational assistance from any of a number of different resources. An ABLEDATA funding fact sheet (Funding Assistive Technology) is available to answer questions about funding resources. Available from: ABLEDATA, 8455 Colesville Road, Suite 935, Silver Spring, MD 20910. 800/227-0216. Cost: free. How to Get More Information on Assistive Devices ABLEDATA is a database of more than 20,000 products for people with disabilities. Included in the ABLEDATA database are descriptions of all wheelchairs currently available in the United States, as well as information about wheelchair manufacturers and local distributors. Cost: Some services are free; nominal charges for specialized searches is dependent upon extent of information required (minimum charge: $5). Research to Find a Cure for Spinal Cord Injury The Quest for Cure. Available from: Paralyzed Veterans of America (PVA) Research and Education. Cost: $22.45 (including shipping & handling). This book explains what happens after spinal cord injury from a biological point of view and then explores various scientific theories directed toward repairing damaged spinal cords. The book also includes interviews with key scientists in the field of spinal cord regeneration research. Database Searching Because new literature is being added continuously to the regeneration field, someone who is interested in keeping abreast of the latest developments in research may wish to search the medical literature database (MEDLARS or MEDLINE) through local libraries. NARIC also can search its REHABDATA database for specific topics related to spinal cord injury research, treatment, and life after injury. Available from: NARIC, 8455 Colesville Road, Suite 935, Silver Spring, MD 20910. 800/346-2742. Cost: Varies, depending upon length of search. ASIA Database A database developed for the American Spinal Injury Association (ASIA), with support from the Paralyzed Veterans of America (PVA). It contains approximately 500 specialized educational materials relating to spinal cord injury, including both audiovisual and written manuals. To request a search, call or write, and specify the subject area you want investigated. A printed report will be mailed directly to you. All requests, up to two subject areas, are free of charge. A printed copy of the holdings in the database is available. Audiovisuals only: $30; written resources: $30; both: $50. National Audiovisual Database of Educational Materials on Spinal Cord Injury. Available from: Linda Herson, Division of Education, The Institute for Rehabilitation and Research, 1333 Moursund, Houston, TX 77030. 713/797-5945. Cost: free. A national database of more than 200 items on SCI, including films, videos, and audiotapes, on coping with SCI, recreation and leisure activities, sexuality issues, safe driving, water safety, and home modifications. Sports and Recreation American Wheelchair Archers. 5318 Northport Drive, Brooklyn Center, MN 55429. 612/520-0476. American Wheelchair Bowling Association. 3620 Tamarock Drive, Redding, CA 96003. 916/243-2695. Canadian Wheelchair Sports Association. 1600 James Nalsmith Drive, Gloucester, Ontario, K1B 5N4. Canada. 613/748-5685. Challenge Air. 12728 Sunlight Drive, Dallas, TX 75230. 214/701-0456. Freedom's Wings International. 1832 Lake Avenue, Scotch Plains, NJ 07076. 908/232-6354. International Wheelchair Aviators. 1117 Rising Hill, Escondido, CA 92029. 619/746-5018. International Wheelchair Tennis Federation. Palliser Road, Barons Court, London, W14 9EN. England. 011/44-71-610-1464. National Association of Handicapped Outdoor Sportsmen. R.R. 6, Box 33, Centralia, IL 62801. 618/532-4565. National Foundation of Wheelchair Tennis. 940 Calle Amanecer, Suite B, San Clemente, CA 92673. 714/361-6811. National Handicapped Sports. 451 Hungerford Drive, Suite 100, Rockville, MD 20850. 800/966-4NHS; 301/217-0960. National Wheelchair Athletic Association. 3595 E. Fountaine Boulevard, Colorado Springs, CO 80910. 719/574-1150. National Wheelchair Basketball Association. 110 Seaton Center, University of Kentucky, Lexington, KY 40506. 606/257-1623. National Wheelchair Billiards Association. 325 Hickory Drive, Cleveland, OH 44017. 216/779-6966. National Wheelchair Racquetball Association (NWRA). 2830 McGinley Road, Monroeville, PA 15146. 412/856-2468. National Wheelchair Shooting Federation. 102 Park Avenue, Rockledge, PA 19046. 215/379-2359. Paralyzed Veterans of America. Sports and Recreation Department. 801 - 18th Street NW, Washington, DC 20006. 800/424-8200; 202/872-1300. Paraplegics On Independent Nature Trips (POINT). 4144 North Central Expressway, Suite 515, Dallas, TX 75204. 214/827-7404. U.S. Quad Rugby Association. 1605 Mathews Street, Fort Collins, CO 80525. 303/484-7395. U.S. Wheelchair Swimming. 229 Quintiliani, 229 Miller Street, Middleboro, MA 02346. 508/946-1964. U.S. Wheelchair Weightlifting Federation. 39 Michael Place, Levittown, PA 19057. 215/945-1964. Wheelchair Sports, U.S.A. 3595 E. Fountain Boulevard, Suite L-1, Colorado Springs, CO 80910. 719/574-1150. Wilderness on Wheels. 7125 West Jefferson Avenue, Suite 155, Lakewood, CO 80235. 303/988-2212. SCI Organizations American Paralysis Association (APA). 500 Morris Avenue, Springfield, NJ 07081. 800/225-0292; 201/379-2690. Hotline: 800/526-3456. APA's mission is to support research to find a cure for spinal cord injury paralysis. Twice yearly, the newsletter Progress in Research reports on research efforts funded by the organization as well as other science news that has bearing on cure research. APA's Walking Tomorrow (also published twice a year) details association and chapter activities. The APA Spinal Cord Injury HOTLINE is a toll-free information and referral service for persons with spinal cord injuries, their families, and professionals in the field. The HOTLINE provides information, support, and resources by directing callers to volunteers or participating spinal cord injury agencies. American Spinal Injury Association (ASIA). 345 East Superior Street, Room 1436, Chicago, IL 60611. 312/908-6207. The American Spinal Injury Association (ASIA) is a corporation organized for the following purposes: to augment and encourage knowledge and investigation of the causes, cure, and prevention of spinal injury; promote and exchange ideas between professionals in the field of spinal injury management; to support, coordinate, and encourage basic research in the field of management of spinal injury and related trauma; to develop teaching and educational material; and to support and develop education of the profession and the laity in the prevention and proper management of spinal injury. The association sponsors an annual scientific/clinical meeting for physicians and other health care professionals involved in spinal cord injury and its management. Membership available to health care professionals. Miami Project to Cure Paralysis (MPCP). 1600 NW 10th Avenue, #R-48, Miami, FL 33136. 800/782-6387; 305/547-6001. The Miami Project to Cure Paralysis is a multidisciplinary basis science and clinical research effort dedicated to finding more effective treatments and, ultimately, a cure for the paralysis resulting from SCI. Founded in 1985 through the efforts of Dr. Barth Green, an internationally renowned neurosurgeon in the field of SCI, and the family of Nick Buoniconti, a former professional football player, the project is located on the campus of the University of Miami School of Medicine/Jackson Memorial Medical Center. The basic science research group is comprised of an international team of basic research scientists studying the repair and regeneration of the injured spinal cord. These scientists, trained in the disciplines of cellular and molecular biology, neuroanatomy, and electrophysiology, believe that the time is right to apply the recent technological advances in each of these fields to experimental models of SCI. The project is forming collaborations with scientists at institutions around the world working on SCI. The clinical research group is characterizing and defining what happens to the human spinal cord following a traumatic injury. As part of this study, clinical researchers employ magnetic resonance imaging (MRI) to better visualize the damaged spinal cord and the technique of focal stimulation to map remaining functional spinal cord pathways. The rehabilitative research group evaluates therapies designed to maximize the physical condition of the person with spinal cord injury. Research topics investigate functional electrical stimulation modalities, exercise physiology, and male fertility. The project raises funds from individuals, corporations, foundations, civic organizations, and Federal agencies in the form of donations, grants, bequests, and sponsorship of special events. National Spinal Cord Injury Association (NSCIA). 600 West Cummings Park, Suite 2000, Woburn, MA 01801. 800/962-9629; 617/935-2722. The NSCIA, formerly the National Paraplegia Foundation, is the oldest nonveteran spinal cord injury organization in the United States. NSCIA has 32 chapters and 20 developing chapters across the country. They also have an extensive information dissemination program through their National SCI Resource Center and SCI Hotline. Paralyzed Veterans of America (PVA). 801 - 18th Street NW, Washington, DC 20006. 800/424-8200; 202/872-1300. PVA is a federally chartered national veterans' service organization. In addition to a strong national presence in the areas of legislation, advocacy, research, and education, they have chapter offices and service offices located throughout the United States. PVA has many excellent publications available in virtually all areas of interest to people with spinal cord injury. PVA also publishes two nationally distributed magazines, Paraplegia News and Sports 'n Spokes. Spinal Cord Injury Network International (SCINI). 3911 Princeton Drive, Santa Rosa, California 95405-7013. 800/548-2673; 707/577-8796. 707/577-0605 (fax). SCINI offers information and referral services to individuals with spinal cord injuries and to their families. SCINI sponsors Spinal Cord Injury Video Access, a lending program of educational audiovisuals, which was established in 1993 under a grant from the Paralyzed Veterans of America Education and Training Foundation. Spinal Cord Society (SCS). Wendell Road, Fergus Falls, MN 56537. 218/739-5252; 218/739-5261. The Spinal Cord Society's motto is "Cure, Not Care." Their primary emphasis is one of supporting cure-oriented research. SCS has more than 200 chapters throughout the world, and it publishes a monthly newsletter about research advances and SCS chapter activities. Women in Spinal Cord Evolution (WISE). 1798 Valley Side Drive, Frederick, MD 21701. 301/694-7519. Women in Spinal Cord Evolution is a support group for women with spinal cord injuries. They hold support group meetings in the Greater Washington/Baltimore area, and they publish a newsletter. Toll-Free Information Numbers PVA Spinal Cord Injury Hotline: 800/526-3456. National Spinal Cord Injury Association Hotline: 800/962-9629. Paralyzed Veterans of America: 800/424-8200. Professional Organizations The following organizations are professional societies whose members work directly in the field of spinal cord injury, or in a closely-related field. While these organizations do not produce consumer-oriented literature, they may be able to provide information about practitioners in the requestor's geographic area. American Association of Spinal Cord Injury Nurses. c/o Eastern Paralyzed Veterans Association, 75-20 Astoria Boulevard, Jackson Heights, NY 11370. 718/803-3782. American Paraplegia Society. c/o Eastern Paralyzed Veterans Association. 75-20 Astoria Boulevard, Jackson Heights, NY 11370. 718/803-3782. American Spinal Cord Injury Association (ASIA). 250 East Superior Street, Room 619, Chicago, IL 60611. 312/908-3425. International Medical Society of Paraplegia. Rehabilitation Services, The Institute for Rehabilitation and Research, 1333 Moursund Avenue, P.O. Box 20095, Houston, TX 77225. Contact: Dr. Edward Carter, Corresponding Secretary. RESNA. 1700 N. Moore Street, Suite 1540, Arlington, VA 22209. 703/524-6686. Other Organizations FES Information Center: 11000 Cedar Avenue, Suite 322, Cleveland, OH 44106. 800/666-2353; 216/231-3257. The center has developed resources for people interested in functional electrical stimulation and makes them available at no cost or low cost. Periodicals of Interest Careers and the Disabled. Available from: Equal Opportunity Publications, Inc., 44 Broadway, Greenlawn, NY 11740. 516/261-8899. Cost: $10/year (3 issues). Mainstream. Available from: Mainstream, Inc. 3 Bethesda Metro Center, Suite 830, Bethesda, MD 20814. 301/654-2400 (V/TT). Cost: $60/year (6 issues). Paraplegia News. Available from: PVA Publications, 2111 East Highland Avenue, Suite 180, Phoenix, AZ 85016-4702. 602/224-0500. Cost: $15/year (12 issues). Paraplegia News is published monthly by PVA. The periodical contains information about legislative issues affecting people with disabilities, independent living, travel, employment, and research. Sports 'n Spokes. Available from: PVA Publications. Cost: $12/year (6 issues). SCI Life. Available from: National Spinal Cord Injury Association, 600 West Cummings Park, Suite 2000, Woburn, MA 01801. 800/962-9629; 617/935-2722. Cost: free to members; $30/year (4 issues) to nonmembers. Accent on Living. Available from: Accent on Living, P.O. Box 700, Bloomington, IL 61702. 800/787-8444. Cost: $10/year (4 issues). Government-Sponsored Research Related to Spinal Cord Injury National Institute on Disability and Rehabilitation Research (NIDRR) The National Institute on Disability and Rehabilitation Research (NIDRR) provides funding to a number of research and treatment centers that are related either directly or indirectly to spinal cord injury. Information about the specific responsibilities of each NIDRR-funded project can be obtained from the NIDRR Program Directory, which is available from NARIC. Model Spinal Cord Injury Systems. NIDRR provides financial assistance to 13 Model Spinal Cord Injury Systems throughout the country for the delivery, demonstration, and evaluation of comprehensive medical, vocational, and other rehabilitation services to meet the wide range of needs of individuals with spinal cord injury. Model Spinal Cord Injury Systems are located at the following facilities: University of Alabama/Birmingham (Birmingham, AL) Rancho Los Amigos Medical Center (Downey, CA) Santa Clara Valley Medical Center (San Jose, CA) Craig Hospital (Englewood, CO) Shepherd Center for Treatment of Spinal Injuries (Atlanta, GA) Northwestern University Medical Center (Chicago, IL) University of Michigan (Ann Arbor, MI) Rehabilitation Institute of Michigan (Detroit, MI) Kessler Institute for Rehabilitation (West Orange, NJ) Mt. Sinai Medical Center (New York, NY) Thomas Jefferson University (Philadelphia, PA) The Institute for Rehabilitation and Research (Houston, TX); and the University of Washington School of Medicine (Seattle, WA). Rehabilitation Research & Training Centers (RTCs). NIDRR funds 52 Research and Training Centers (RTCs), which conduct research and training in a variety of areas related to all aspects of disability. Of particular interest to people with spinal cord injuries are: The RTCs on the Prevention and Treatment of Secondary Complications of Spinal Cord Injury (University of Alabama and Northwestern University) The RTC on Rehabilitation and Childhood Trauma (Tufts-New England Medical Center), The RTC on Community-Oriented Services for Persons with Spinal Cord Injury (Baylor College of Medicine), and The RTC on Independent Living (The Institute for Rehabilitation and Research, Houston, TX). Rehabilitation Engineering Research Centers (RERCs). One of NIDRR's major missions is to fund research related to the development and use of assistive devices for people with disabilities. To address this mission, NIDRR funds 18 Rehabilitation Engineering Research Centers (RERCs) that conduct research on specific areas of assistive technology. Of particular interest to people with spinal cord injuries are the RERCs on wheelchair technology (University of Pittsburgh, Health Sciences Center). National Institutes of Health The National Institutes of Health (NIH) provides funding for research related to the care, treatment, and prevention of many diseases and conditions. NIH is comprised of 13 separate institutes that address specific disease categories or parts of the body. Of direct relevance to people with spinal cord injuries are the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institute of Maternal and Child Health's National Center for Medical Rehabilitation Research (NCMRR). U.S. Department of Veterans Affairs The U.S. Department of Veterans Affairs (VA) provides funding to researchers in VA hospitals throughout the country to conduct research on all aspects of spinal cord injury, from the development of new assistive devices to improved treatment for spinal cord injury-related health problems and research toward a cure for SCI. The agency also sponsors a biannual regeneration research symposium that is attended by scientists from all over the world. Private Organizations that Fund SCI Research American Paralysis Association. 500 Morris Avenue, Springfield, NJ 07081. 800/225-0292; 201/376-8884. PVA Spinal Cord Research Foundation. c/o Paralyzed Veterans of America, 801 - 18th Street NW, Washington, DC 20006. 800/424-8200; 202/872-1300. Spinal Cord Society. Wendell Road, Fergus Falls, MN 56537. 218/739-5252; 218/739-5261. National Spinal Cord Injury Association. 600 West Cummings Park, Suite 2000, Woburn, MA 01801. 800/962-9629; 617/935-2722. About this Document This guide was produced by the [26]National Rehabilitation Information Center (NARIC), a project funded by NIDRR under contract #HN93029001. NARIC is operated by KRA Corporation. Copyright © 1995 KRA Corporation. This document is available in several forms: as an electronic text file (this document), on disk, on cassette, in braille, and in printed form (both in large print and formatted with a desktop publishing program). This guide is part of a series of resource guides produced by NARIC. Those interested in distributing this document in printed form are encouraged to contact NARIC at the below address, and we will arrange to send you a free copy in any of the formats mentioned above. The National Rehabilitation Information Center invites invite your comments and recommendations on this resource guide; corrections, information about publications and resource information that is not included here, and other suggestions are welcome. Please address your remarks to NARIC, 8455 Colesville Road, Suite 935, Silver Spring, MD 20910-3319, or to [27]Dan Wendling, resource guide editor . NARIC's phone numbers are: 800/227-0216, or in Maryland and outside the United States, 301/588-9284 (both are voice); our TT number is 301/495-5626 (TT) and our fax number is 301/587-1967. Date of original release: March 1994 Date of electronic release: May 199