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Spinal Cord Injury Links

 

From The Ashes:
A Brain Injury Survivor's Guide

Injury is the number one killer of young Americans. Brain and spinal cord injuries cause permanent disability for hundreds of thousands of people each year. Especially troubling is that many of these injuries could have been prevented

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Organizations & Agencies
American Chronic Pain Association -- P.O. Box 850, Rocklin, CA. 95677 - Telephone: 916-632-0922.  Information, referrals  and support groups - url: http://www.theacpa.org
 
American Paralysis Association (APA) -- 500 Morris Ave., Springfield, NJ. 07081. Telephone: 800-225-0292 Fax:  207-912-8433
 
American Syringomyelia Alliance Project (ASAP) -- P.O. Box 1586, Longview, TX. 75606-1586   Telephones: 800-272-7282;  903-236-7079 - FAX:  903-757-7456 - url: http://www.asap.org/
 
American Spinal Cord Injury Association (ASIA) -- 345 E. Superior Room 1436, Chicago IL. 60611    Telephone: 312-908-6207 - Publication ASIA Bulletin - url: http://www.asia-spinalinjury.org
 
Access Alaska -- Opening doors to independence for seniors and Alaskans with disabilities for more than two decades. 
url: http://accessalaska.org
British Brain & Spine Foundation  (BBSF)  -  7 Winchester House,  Kennington Park Cranmer Road 
London SW9 6EJ  England   - 
Tel: +44 (0)171 793 5900  - Fax: +44 (0)171 793 5939 - Brain and Spine Helpline (within UK): 0800 328 5758 - Web: http://www.brainandspine.org.uk/ 
 
Canadian Paraplegic Association -  320-1101 Prince of Wales Dr, Ottawa, Ontario, K2C 3W7 - Telephone: 613-723-1033 - Fosters and promotes the independence, self-reliance and all participation of Canadians with spinal cord injury and other significant mobility disabilities through counseling, information and advocacy services. 
url: http://www.canparaplegic.org/index.html  -- 
email: eboyd@canparaplegic.org
 
Casa Colina Centers for Rehabilitation - 255 East Bonita Ave, Pomona, CA 91769-6001- 
Telephone: 909-596 7733 ext 2221, 
Toll-free: 800-926-5462 - FAX 909-593 0153
Email: rehab@casacolina.org -- url: http://www.casacolina.org
Featuring: Outdoor Adventures
 
Center for Research on Women with Disabilities (CROWD) - Baylor College of Medicine, Dept of Physical Medicine & Rehab, 3440 Richmond Ave, Ste B, Houston, TX 77046  Telephone: 713-960-0505
A research center that focuses on issues related to health, aging, civil rights, abuse and independent living. CROWD's purpose is to promote, develop, and disseminate information to expand the life choices of women with disabilities. Researchers develop and evaluate models for interventions to address specific problems effecting women with disabilities.  url: http://www.bcm.tmc.edu/crowd/
 
Christopher Reeve Paralysis Foundation - http://www.apacure.com -- Telephone: 800-225-0292.
Eastern Paralyzed Veterans Association
75-20 Astoria Blvd.,  Jackson Heights, NY 11370
Telephone:  718-803-0414 - The Eastern Paralyzed Non-profit organization dedicated to serving the needs of spinal cord injured veteran,. url: http://www.epva.org

Spinal Cord Injury Resources continued
 The Office of Women's Health in the Department of Health and Human Services (DHHS) - federal resource center for women with disabilities in the National Women's Health Information Center (NWHIC). url: http://www.womenshealth.gov/
MEDCON -- The University of Washington offers a 24-hour, toll-free consultation and referral service for health care professionals and their clients with spinal cord injury. To contact MEDCON, dial 206-543-5300 if you live in the  Seattle area or 800-326-5300 if you are calling long distance. An operator will direct your call to the physician or other health  care professional best able to answer your question. 
Mental Health Net -- Self-help resources including symptoms and treatments. Many of these resources are targeted at the lay person, but professionals may find them useful as well. URL: http://mentalhelp.net/
National Association for Home Care --  228 Seventh St SW, Washington, DC 20003 - Telephone:
202-547-7424 - An association for home care and hospice-related information. Provides information on state associations, publications, legislation, regulations, and advocacy.  url: http://www.nahc.org/ 
National Spinal Cord Injury Association (NSCIA) -- 8300 Colesville Rd., ste 551, Silver Spring, MD 20910 Telephones: 800-962-9629; Fax: 301-588-9414 (11:30 am - 5:30 pm EST)  url:  http://www.spinalcord.org - e-mail: nscia2@aol.com
Paralyzed Veterans Of America (PVA) -- PVA is a national organization whose members are veterans with spinal cord injury, their family members and caregivers, health-care professionals, and others with an interest in the disciplines spinal cord medicine and paralysis. National Headquarters 800-424-8200. TTY 800- 795-4327 -- 800-795-HEAR. Health Care Hotline 800-232-1782 url:  http://www.pva.org/site/c.ajIRK9NJLcJ2E/b.6305401/k.BCBB/Home.htm
SCI Info Pages - A free resource for those with a spinal cord injury, or other disabling injury or disease of the spine. url: http://www.sci-info-pages.com/
Spinal Injuries Association  -- 76 St.James's Lane,  Muswell Hill,  London N10 3DF  England 
Telephone:  02-084-442-121 --  Fax:  02-084-443-761 --  Freephone Information Line 0800 980 0501 
email:  sia@spinal.co.uk  --  url:  http://www.spinal.co.uk 
The TBI & SCI Projects-- Santa Clara Valley Medical Center -- url: http://www.tbi-sci.org
Email: tbird@tbi-sci.org
Women's Guide to Alcohol and Drug Rehabilitation --  information, resources and next-steps for women who are trying to recover from drug and alcohol addiction. Phone: 800-993-3869 -- url: http://www.recoveryconnection.org/alcohol-drug-rehab-for-women/

Advocacy Groups, Support Groups, Mailing Lists
Adapt -- Disability rights activists organization.  url: http://www.adapt.org
Quadriplegic (Tetraplegic) Discussion Group:  This Internet  mailing list, called QUAD-LIST, is a forum for quadriplegics (tetraplegics) to communicate with one another. To subscribe to the list, follow the instructions found on Jim Lubin's  QUAD-LIST web page. url: http://www.eskimo.com/~jlubin/disabled/quadlist.htm
Sexuality --  Links to information and resources
Spinal Cord Injury Support Network -- Blain, Wa  Telephone:  360-332-937
Support GroupsTBI-- Links to and information on Traumatic Brain Injury Support Groups worldwide
The TBI & SCI Projects -- Santa Clara Valley Medical Center -- url: http://www.tbi-sci.org
Email: tbird@tbi-sci.org
Vent Users Mailing List:   This Internet mailing list is a forum where ventilator users can communicate with one another. To join, fill out the online form at the website of list owner Jim Lubin.
url: http://www.eskimo.com/~jlubin/disabled/ventuser.htm
wheelchairmobility.com -- contains information about spinal cord injury and wheelchair life, links to and resources and a "how-to" video on advanced wheelchair mobility. 
url: http://www.wheelchairmobility.com 
World Association of Persons with Disabilities - Voices of positive ability, advances the interests of persons with disAbilities at national, state, local and home levels.  4503 Sunnyview Dr., Ste 1121; PO Box 14111;  Oklahoma City, OK 73113; Telephone: 405-672-4440; Fax: 405-672-4441 url: http://wapd.org

General Resources
Article:  ADAPTED VEHICLES:  Paving the Road to Independence [MDA Quest site]  -- by by Lori Hungate -- sections: "Driver Training", "Mistakes to Avoid", "Taking the Sting out of Conversion Price", "Inside Controls", and "Resources". url: http://www.mdausa.org/publications/Quest/q41vehicle.html
Anxiety Disorders Association of America -- 11900 Parklawn DR #100, Rockville, MD 20852-2624
Telephone: 301-231-9350 -- email: AnxDis@adaa.org - url: http://www.adaa.org
Assistive Technologies Alliance  -- ATRC/University of Washington -- P.O. Box 357920, Seattle, WA 98195-7920 --Telephone: 206-685-6836 (V/TTY), 800-214-8731 V/TTY.  Offers programs, electronic networking and information,  forums, and an exchange for AT devices. url:http://wata.org/
Assistive Technology Industry Association -- links and information.Telephone: 877-687-2842 or 847-869-1282 - url: http://www.atia.org  (US & Canada)
Center for Computer Redistribution, Inc. -- P.O. Box 70001 Richmond, Virginia 23255 supply free personal computers to disabled persons. Our goals include  and social interaction for the disabled through participation on the Internet.  url: http://www.freepcs.org/
College Search and Financial Aid: Search for Colleges, Universities, Scholarships and Financial Aid Online Search for colleges, universities, scholarships, and financial aid with a free online service providing profiles of colleges & universities in the US and Canada, virtual tours of many schools, electronic applications, financial info, career information and planning tools, ask the Experts and more. - url: http://www.collegeview.com/
Driver Rehab Programs - Links to and information on driver rehab programs url: http://wata.org/
Disabled and Alone/Life Services for the Handicapped, Inc --  352 Park Ave S. Ste 703, NY 10010 Telephone: 212-532-6740; 800-995-0066 -- url: http://www.disabledandalone.org/
Disabilityclaims.com -- Created as a resource for disability legal issues it attempts to address the legal concerns of disabled individuals.It also provides many common sense doís and doníts in the disability benefit application process. Telephone: 212-297-0700; Fax: 212-297-0730 - 
email: http://www.disabilityclaims.com/ - url: riemer@tiac.net 
Disability Resource Directory, Manhattan, Kansas USA -- url:http://www.kansas.net/~cbaslock/index.html
Domestic Violence Hotline -- (800) 799-SAFE (799-7233) to find out about domestic violence shelters and programs in your area.  url: http://www.ndvh.org/
Family Violence Prevention Fund (FVPF) --  works to end domestic violence and help women and children whose lives are devastated by abuse, because every person has the right to live in a home free of violence. url: http://www.fvpf.org/
Mental Health Advocacy Project -- 111 W. Saint John St., San Jose, CA 95113 315 
Telephone:  408-294-9730 FAX:  408-293-0106
Mental Health Net -- Self-help resources including symptoms and treatments. Many of these resources are targeted at the lay person, but professionals may find them useful as well. URL: http://mentalhelp.net/
Planning and Execution Assistant and Trainer (PEAT) -- 650 Castro St., Ste. 120-197, Mountain View, CA 94041- Telephone: 650-494-2002; Fax: 650-493-2002 - Attention Control Systems, Inc.
email: prefrontal@aol.com - url:  http://www.brainaid.com
Presidental Taskforce on Employment of Adults with Disabilities -- Department of Labor 1331 F Street, NW, Washington, DC 20004-1107 -- Telephone:  202-376-6200 - 
url: http://www.dol.gov/
Project Walk -  is a two year exercise recovery program for individuals with certain spinal cord injuries. url: http://www.projectwalk.org/
Rehabilitation International -- A federation of national and international organizations and agencies working for the prevention of disability, the rehabilitation of people with disabilities, and the equalization of opportunities within society on behalf of persons with disabilities and their families throughout the world. url: http://www.rehab-international.org
Senior Wheels USA -- Provides free, power wheelchairs for seniors who are permanently disabled and unable to self-propel a manual wheelchair, and who are not covered by an HMO. 800-246-6010

Publications - New Media
Disability Now -- Disability news and information.  The UK's leading disability publication. 
url: http://www.disabilitynow.org.uk.
MainstreamMagazine -- Mainstream, Inc. -- Telephone: 619-234-3138
My Handi-Capable Reporter - 1065 W. Lomita Blvd. #455, Harbor City, CA 90710-- A guide to news of medical findings and studies, upcoming events and to restaurants and other public establishments in Southern California. url:  http://www.geocities.com/MHC_Reporter   -- email: mhcr@wgn.net 
New Mobility's Interactive Cafe -- Online community for disability news, resources and culture.
url:  http://www.newmobility.com/
Paralinks -- An electronic magazine for people with SCI. - url: http://www.paralinks.net
Paraplegia News - Paralyzed Veterans of America, 801 18th St., NW, Washington, DC 20006.  A magazine that presents news concerning paraplegic and wheelchair living. 
Ragged Edge Magazine  url: http://www.ragged-edge-mag.com/
SCI Life, NSCIA -- 545 Concord Ave, Ste 29, Cambridge, MA. 02138-1122 -- Telephone: 800-962-9629 Must be a member of NSCIA  --
Special Child Magazine -- A free online publication for parents and caregivers of children with special needs. Features include stories from their readers,  informative articles, a family advice column, a fully interactive bulletin board service, and much, much more. url: http://www.specialchild.com

Sports & Recreation
Access to Recreation, Inc. -- 2509 E. Thousand Oak Blvd. Ste. 430, Thousand Oaks, CA. 91359-5072 Telephone: 800-634-4351 -- url: http://www.accesstr.com; email: dkrebs@gte.net
American Rehabilitation Magazine - 4 issues per year $9.00 - Federal Rehabilitation Services Admin. -- 330 C St, SW, Washington, DC 20201 -- Telephone: 202-205-8296 url: 
American Wheelchair Table Tennis Association -- 23 Parker St, Port Chester NY. 10573 -- Telephone: 914-937-3932  email:  johnsonjennifer@yahoo.com
Association of Disabled American Golfers -- 7700 E. Arapahoe Rd. Ste. 350,  Englewood, CO 80112 -- Telephone: 303-220-0921
Canadian Wheelchair Basketball Association --1600 James Naismith Dr., Gloucester, Ontario K1B5N4 -- Telephone: 613-748-5888 - url:  http://www.cwba.ca
Casa Colina Centers for Rehabilitation - 255 East Bonita Ave, Pomona, CA 91769-6001- Telephone: 909-596 7733 ext 2221, Toll-free: 800-926-5462 - FAX 909-593 0153 - Email: rehab@casacolina.org -- 
url: http://www.casacolina.org -- Featuring: Outdoor Adventures
Disabled Sports USA -- 451 Hungerford Dr. Ste100, Rockville, MD. 20850 --
Telephone: 301-217-0960; Fax: 301-217-0968; TDD: 301-217-0963  - url: http://www.dsusa.org/
Eastern Amputee Athletic Association -- 2080 Ennabrock Rd, N. Bellmore, NY 11710 -- Telephone: 516-826-8340
Human Kinetics Publishers -- Physical Activity Links -- url: http://www.humankinetics.com/
International Paralympic Committee -- Adenauerallee 212-214 - 53113 Bonn Germany -
Telephone: +49 (228) 2097-200; Fax: +49 (228) 2097-209 - email: info@paralympic.org 
url: http://www.paralympic.org 
International Stoke Mandeville Wheelchair Sports Federation (ISMWSF) -- Olympic Village, Guttmann Road, Aylesbury, Bucks HP21 9PP, UK.-- url: http://www.wsw.org.uk
International Wheelchair Aviators - 1117 Rising Hill Way, Escondido, CA 92029  Telephone:
619-746-5018  - A group of disabled and able bodied individuals who are interested in flying. The IWA provides handicapped flying information to those who are interested. IWA publishes a bi-monthly newsletter telling of current achievements and activities of its members.
National Sports Center for the Disabled -- url:  http://www.nscd.org
National Wheelchair Basketball Association -- 2850 North Garey Ave, PO Box 6001 , Pomona, CA. 91769-6001 -- Telephone: 909-596-7733 ext 2211  url: http://www.nwba.org 
Palaestra -  Produced in cooperation with the Committee on Sports for the Disabled of the United States Olympic Committee and the Adapted Physical Activity Council of the American Alliance for Health, Physical Education, Recreation and Dance.  url:  http://www.palaestra.com 
Riding for the Disabled Association Ltd. (Hong Kong) -- url: http://www.rda.org.hk
Shake-A-Leg -- Nonprofit organization offers recreational therapy for people with spinal cord injury and related nervous system disorders.  url:http://www.shakealeg.org/
Special Olympics International -- url:  http://www.specialolympics.org/
Therapeutic Riding Centers -- url: http://horses.about.com/cs/therapeuticriding/index.htm?once=true&amp 
US Cerebral Palsy Athletic Assoc (USCPAA) -- 25 W. Independence Way, Kingston,  RI. 02881 -- Telephone:  401-874-7465 - url:  http://www.cpalsy,baikal.ru/lifestyle/sport/uscpaa.htm
U.S. Quad Rugby Association -- 309 Stoney Ford Rd, Holland, PA. 18966
Telephone: 215-504-0445 url:  http://www.quadrugby.com
 U.S. Rowing Association -- 201 S. Capitol Ave Ste 400, Indianapolis, IN 46225
 Telephone: 317-237-5656 -- 
Wheelchair Sports Worldwide -- url: http://www.wsw.org.uk

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