agencies - organizations - associations

ABLEDATA Database
8630 Fenton Street, Suite 930, Silver Spring, MD 20910
Tel: 800-227-0216 Fax: 301-608-8958
E-mail: abledata@macroint.com.
ABLEDATA is an electronic database of information with listings of assistive technology and rehabilitation equipment available in the United States. It contains over 22,000 products with detailed description of the item, company contact information and distributor listings. New products added daily. Their Web site also provides Fact Sheets and Consumer guides on various types of assistive technology and equipment.

Accessibility Equipment Manufacturers Association
Po Box 380, Metamora, Illinois 61548-0380
Phone: 800-514-1100 Fax: 309-923-7964
AEMA meets the special needs of those involved with accessibility equipment. This includes the design, installation and maintenance of vertical, inclined and horizontal conveying systems which are used primarily to provide access for physically challenged persons in public and residential environments. The products are commonly known as inclined platform (wheelchair) lifts, vertical platform lifts, limited-use/ limited application elevators, and stairlifts.

AMBUCS
PO Box 5127, High Point, NC 27262
336-869-2166 or Email: ambucs@ambucs.com
A volunteer organization dedicated to creating opportunities and independence for people with disabilities by: performing community service, providing AmTrykes to children with disabilities, and providing scholarships for physical and occupational therapists.

American Pain Society
4700 W. Lake Ave, Glenview, IL 60025
847-375-4715 or E-mail info@ampainsoc.org
The American Pain Society (APS) is a multidisciplinary educational and scientific organization dedicated to serving people in pain.

American Syringomyelia Alliance Project
P.O. Box 1586, Longview, Texas 75606-1586
800-ASAP-282 or Email: Info@ASAP.org
ASAP (American Syringomyelia Alliance Project) established on May 31,1988, publishes a newsletter, provides written material on Syringomyelia (SM) and Chiari Malformations, videotapes of lectures by prominent neurosurgeons, an annual conference to bring people with SM together, and a networking project so people with SM may contact one another. ASAP's goals include: increasing public awareness; urging research efforts and raising funds to find all causes, to develop new treatments, and to improve existing treatments.

Brain and Spinal Cord
Email: info@brainandspinalcord.org
BrainandSpinalCord.org is an informational website for brain injury and spinal cord injury survivors. While the site is relatively new, they hope to eventually have answers and information about all of the most frequently asked questions and important issues facing survivors.

Breckenridge Outdoor Education Center
P.O. Box 697, Breckenridge, CO 80424
970-453-6422 or Email: BOEC@Colorado.NETl
Purpose is to empower people of all abilities through high quality outdoor experiences. Our goal is to provide participants the opportunity to learn new skills, experience nature and natural areas, and to have challenges that will enhance health and self-confidence necessary to expand human potential.

The Center for An Accessible Society
2980 Beech St
San Diego, CA 92102
(619) 232-2727
(619) 234-3155 FAX
(619) 234-3130 TTY
The Center for An Accessible Society is a national organization designed to focus public attention on disability and independent living issues. The Center serves as a communications clearinghouse providing journalists credible information and quotable sources on national disability policy and independent living issues.

Centers for Independent Living
Provided by ILRU at TIRR
or email:ilru@ilru.org
A listing of Centers for Independent Living (CILs). These are private, nonprofit corporations that provide services to maximize the independence of individuals with disabilities and the accessibility of the communities they live in. At this time, there are links to the web sites of about 44 CILs.

Disability Mall
A Resource Directory of organizations and companies that provide information, products and services for individuals with disabilities.

Cure Paralysis Now
P. O. Box 820 Alvin, Texas 77511
Cure Paralysis Now is dedicated to all who are involved with or affected by SCI, especially researchers and clinicians in multi-disciplinary fields of study that may relate to the advancement of the healing or sure of spinal cord paralysis.

Cutting Edge CILs
By: Douglas Lathrop
An article from New Mobility magazine (July, 1999) that updates the role of the nations independent living centers and highlights the activities of several centers.

disABLEDperson.com
The primary focus of this non-profit organization is the employment of people with disabilities. Resume and job posting are available, free to individuals and businesses.

Electrologic of America, Inc.
3035 Dryden Rd, Dayton, OH 45439
513-299-7588
This company provides information about CFES (Computerized Functional Electrical Stimulation) and manufactures physical therapy equipment for individuals with SCI. They feature the latest in FES ergometry research and development.

Foundation for Aquatic Injury Prevention
11230 White lake Rd, Fenton, MI 48430
800-342-0330 or e-mail ron@aquaticisf.org
This non-profit educational group is dedicated to reducing the number of diving injuries, drownings and near drownings. FAIP is comprised of victims, their families and others dedicated to the prevention of tragedy in the water. FAIP is engaged in a variety of activities including education, legislation and support.

Group Involvement - Does it Make a Difference?
Article from Pushin' On Newsletter. Discusses several groups and organizations that provide information and support to individuals with SCI. Produced by the RRTC in Secondary Complications in SCI at the University of Alabama at Birmingham, Dept. of P M & R.

Gulf Coast SCI Support Group - National Spinal Cord Injury Association
115 Alpine St, Mobile, AL 36611
334-456-1768
Consumer support group. Chapter of the National Spinal Cord Injury Association.

ILRU - Independent Living Research Utilization Program
2323 S Shepherd, Suite 100, Houston, Texas 77019
713-520-0232 or Email:ilru@ilru.org
A national center for information, training, research, and technical assistance in independent living. They operate the IL NETWORK , with the National Council on Independent Living (NCIL), and organizations and individuals involved in independent living nationwide.

International Association of Rehabilitation Professionals
1661 Worcester Rd, #113, Framingham, MA 01701
800-240-9059 or Email: IARPHQ@btfenterprises.com
IARP unites rehab professionals across North America and beyond to promote the availability of services for persons with disabilities. IARP serves a diverse membership practicing in the fields of longterm disability and disability management consulting, case management and managed care, forensics and expert testimony, life care planning, and Americans with Disabilities Act (ADA) consulting.
IARP supports professional growth, fosters rehabilitation research and management innovation and strives to shape public policy favorable to private-sector rehabilition .

Karolinska Institute
Dept of Neuroscience
S-171 77 Stockholm, Sweden
The Department of Neuroscience at Karolinska Institute conducts extensive research into the regulation of nerve cell growth and factors which are of importance for neuronal regeneration and degeneration in spinal cord injury

Kessler Institute for Rehabilitation
1199 Pleasant Valley Way, West Orange, NJ 07052
973-731-3600
Kessler Institute for Rehabilitation is a nonprofit, licensed comprehensive physical rehab hospital for people with physical disabilities. With 11 facilities in New Jersey, Kessler offers inpatient and outpatient programs for spinal cord and brain injuries, stroke, amputation, sport and work-related injuries and back and neck pain.

Keystone Paralyzed Veterans of America
362 Meadow Brook Rd, Trafford, PA 15085
412-864-9323
The Keystone PVA monitors health care for SCI veterans, assist with educational, physical rehabilitation, veterans and civilian benefits, employment, legislative and advocacy initiatives that promote the normal life possible for the Veteran with SCI.

Model SCI System Dissemination Center
MSCIS Dissemination Center
TIRR, B-107, 1333 Moursund
Houston, TX 77030-3405
1-800-732-8124
The MSCIS Dissemination Center collects, maintains and disseminates consumer and professional educational materials related to SCI.

National Disability Rights Network
900 Second Street NE, Suite 211, Washington, D.C. 20002
202-408-9514 or Email: info@ndrn.org
A national organization for the federally mandated nationwide network of disability rights agencies, protection & advocacy systems (P&As), and client assistance programs (CAPs). NAPAS facilitates coordination of its members; represents the needs of members to federal agencies and Congress and provides technical assistance and training to member agencies which enhance their effectiveness on the state and local level. Provides links to state P&As and CAPs.

National Center in Physical Activity and Disability (NCPAD)
800-900-8086 or E-Mail: ncpad@uic.edu
This Center, operated by the Dept of Disability and Human Development at the Univ of Illinois at Chicago, offers resources for fitness and exercise professionals, health professionals, and researchers who share our interest in promoting increased physical activity for people with disabilities.

National Information Center for Children and Youth with Disabilities
P.O. Box 1492, Washington, DC 20013
800-695-0285 or Email: nichcy@aed.org
NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals. Their special focus is children and youth (birth to age 22).

National Injury Surveillance Unit
Mark Oliphant Building, Laffer Drive
Bedford Park, SA, 5042
AUSTRALIA
Email: nisu@flinders.edu.au
A web site developed to provide access to published reports, datasets and general information about injury in Australia. Reports of the Australian SCI Registery are published here.

National Resource Center for Parents with Disabilities
Through the Looking Glass
2198 Sixth St, Suite 100, Berkeley, CA 94710-2204
800-644-2666 or 510-848-1112
E-mail: tlg@lookingglass.org
This center operates under the auspices of TLG, an agency that offers services to families in which one or more members has a disability or medical issue. Their focus is on areas of custody, pregnancy & birthing, adoption and adaptive parenting equipment. Publishes newsletter, Parenting with a Disability (free).

National Spinal Cord Injury Association
6701 Democracy Blvd, Suite 300-9
Bethesda, Maryland 20817
Phone: (301) 588-6959 or FAX: (301) 588-9414
800-962-9629
or Email: NSCIA2@aol.com
The NSCIA works to develop better programs and services and act as community advocates for improved access, housing, transportation, employment, and leisure time activities for disabled people. Peer support and other services are also provided to individuals with SCI, families, and health care providers. The organization also supports and encourages research aimed at improving care for persons with SCI and developing a cure for spinal cord injury and disease.

National Spinal Cord Injury Statistical Center
UAB Spain Rehabilitation Center, Rm 544
619 19th St South
Birmingham, AL 35249-7330
205-934-3320 or Email: nscisc@sun.rehabm.uab.edu
Supervises and directs the collection, management, and analysis of data from the Model Regional SCI Care Systems resulting in the world's largest SCI database.

National Wheelchair Basketball Assn
David Kiley, Commissioner
Charlotte Institute of Rehabilitation
1100 Blythe Boulevard, Charlotte, N.C. 28203
704-355-1064
The website of the NWBA contains information about wheelchair basketball--the sport's history, Hall of Fame and most valuable players, plus game schedules, rosters and officers.

Pain Online
A website for both physicians and persons who are experiencing Central Pain. It gives descriptions of central pain, and encourages those with central pain to respond with their symptoms.

Paralyzed Veterans of America
The Paralyzed Veterans of America (PVA), a congressionally chartered veterans service organization founded 50 years ago, has developed a unique expertise in a wide variety of issues involving the special needs of our members - the armed forces who have experienced spinal cord injury or dysfunction.

Physically Challenged Bowhunters of America
RD 1 - Box 470, New Alexandria, PA 1567067640
412-668-7439 or Email: Karen Vought
Introduces and promotes the great sports of archery & bowhunting to disabled sportspersons in the US & Canada in a safe and positive manner. Works with rehabs, organizations, doctors, and manufacturers. Publishes quarterly newsletter of adaptive products, guides, outfitters, accessible areas, and personal success stories.

QUAD Link
Email: Tim
A gathering of Net friends, listing the Email links and home pages of individuals with spinal cord injury, both quads and paras.

Rehabtool.com
This online service offers a variety of high-tech assistive and adaptive technology products, augmentative and alternative communication devices, computer access equipment, multilingual speech synthesis and voice recognition software. Products include a selection of virtual on-screen keyboards, voice-enabled communication boards, as well as cognitive rehabilitation tools adapted to the special needs of people with disabilities.

Rx List
The RxList web site database consists primarly of prescribed drugs currently on the US market or close to aproval. The RxList monographs for brand or generic names lists symptoms, side effects, or drug interactions. A supplement to the advice provided by your physician and pharmacist.

Shake-A-Leg
200 Harrison Ave, Newport, RI 02840-3781
401-849-8898 or Email: shake@mail.shakealeg.org
Shake-A-Leg is a nationally-recognized second-stage therapeutic center that provides mainstream and complimentary therapeutic services that develop independent living skills for individuals who have experienced spinal cord injury and related nervous system disorders. Recreational therapies include sailing, handcycling, kite flying, kayaking, etc.

Shriners Hospitals for Children - Chicago
2211 N. Oak Park Ave. Chicago, IL 60707
(773) 622 5400
Shriners Hospitals for Children is committed to excellence in patient care, research and teaching. Shriners Hospitals provides expert, family-centered care, at no charge. Children under the age of 18 are eligible for treatment of orthopaedic problems, burns, spinal cord injuries, and cleft lip and palate, regardless of financial need or relationship to a Shriner.

Spinal Cord Injury Recovery Center
This internet based organization offers advice, resources and assistance for people with SCI and their families. The site also describes major causes of SCI and common therapies.

STAR - Statewide Technology Access and Response System for Alabamians with Disabilities
PO Box 20752, Montgomery, AL 36120-0752
1-800-STAR656
The STAR program is to enhance independence, productivity and quality of life for all Alabamians with disabilities through access to assistive technology devices and services. STAR is a federally funded grant under the Alabama Dept of Rehabilitation Services. Their services include training, workshops, demonstration areas, equipment loan program and information/referral.

Think First
22 S Washington St, Park Ridge, IL 60068
800-Think56 or Email: thinkfirst@aans.org
The THINK FIRST Foundation's goal is to prevent brain and spinal cord injuries through the education of individuals, community leaders and the creators of public policy. This upbeat program educates young people about personal vulnerability and risk taking. The message is that you can have a fun-filled, exciting life, without hurting yourself if you "THINK FIRST" and use your mind to protect your body.

TIRR Rehabilitation Centers
713-521-0020 in Houston or 409-833-1919 in Beaumont.
Email: tirr@bcm.tmc.edu
TIRR [The Institute for Rehabilitation and Research] Rehabilitation Centers offers outpatient rehabilitation services at convenient locations in and around Houston and Beaumont. Programs and services include: Industrial Rehabilitation, Injury Prevention Services, Musculoskeletal Rehabilitation, and Sports Medicine and Arts Medicine.

Trace Center
University of Wisconsin-Madison, S-151 Waisman Cntr
1500 Highland Ave, Madison, WI 53705-2280
608-263-5408, or Email
A research, development and resource center on technology and disability that works to advance the ability of people with disabilities through the use of communication, computer and information technologies.

Transverse Myelitis Association
1787 Sutter Pkwy, Powell, OH 43065-8806
614-766-1806 or Email: ssiegel@myelitis.org
The Transverse Myelitis Association (TMA) provides support to families affected by Transverse Myelitis, an acute spinal cord inflammation involving both sides of the spinal cord. TMA enables affected families to exchange information, support, and resources; engages in patient advocacy; provides a pen pal service; conducts group meetings; and offers phone support. They also offer appropriate referrals; patient and professional education; and informational reports and brochures.

United Spinal Association
United Spinal Association (formerly known as Eastern Paralyzed Veterans Association) is dedicated to enhancing the lives of individuals with spinal cord injury or disease by assuring quality health care, promoting research, advocating for civil rights and independence, educating the public about these issues and enlisting their help to achieve these fundamental goals.

United States Handcycling Federation
Email: webmaster@ushf.org
The United States Handcycling Federation, founded in 1998, works to promote the development of Handcycling in both its recreational and competitive natures. The USHF is currently working to provide an outlet for handcyclists in this country who want to race, tour, or just have fun in their handcycles. It is our belief that handcycling -- whether for recreation or for sport -- can improve the life of any individual regardless of their ability.

U.S. Quad Rugby Assn
Judy Pfiester - Secretary
309 Stoney Ford Rd, Holland, PA 18966
215-504-0443 or Email Judy Pfiester or the
President of the U.S.Q.R.A.
The website for the U.S. Quad Rugby Association. Contains information about all the happenings in quad rugby throughout the country - clinics, games, file library and more. Submit your local information.

Virginia Spinal Cord Injury Registry
Box 279, Woodrow Wilson Rehabilitation Center
PO Box 1500, Fishersville, VA 22939
540-332-7200 and Email: hickmajk@wwrc.state.va.us
The Virginia SCI Registry works to improve the health, independence, productivity and quality of life of persons with SCI by providing information on resources, maintaining current information on the level of function and service needs of persons with SCI and promoting the delivery of appropriate rehabilitative services across the Commonwealth.

Web Accessibility Initiative
MIT/LCS Room NE43-355, 200 Technology Square
Cambridge, MA, 02139
1-617-253-2613
The Web Accessibility Initiative promotes the usability of the web for people with disabilities. Web accessibility is enhanced through technology, guidelines, tools, education/outreach and research/development.

World Institute on Disability
510 16th St, Ste 100, Oakland, CA 94612
510-763-4100 or fax 510-763-4109
A nonprofit organization, WID is dedicated to promoting independence and full societal inclusion of people with disabilities. WID focuses on high quality research and public education on a wide range of issues.

Zia Chapter, Paralyzed Veterans of America
833 Gibson SE, Albuquerque, NM 87102
The Zia Chapter of the PVA works to aid and assist Veterans through advocacy and providing information related to diseases of the spinal cord.