Support and Resources for People with Transverse Myelitis
American Chronic Pain Association (ACPA)
PO Box 850
Rocklin, CA 95677-0850
Phone: 916-632-0922 or 800-533-3231
- The ACPA has offers peer support and education in pain management skills to people with pain, family and friends, and health care professionals. The information and tools on their site can help you to better understand your pain and work more effectively with your health care team toward a higher quality of life.
Christopher & Dana Reeve Paralysis Resource Center (PRC).
Short Hills Plaza
636 Morris Turnpike , Suite 3A.
Short Hills, NJ 07078
Phone: 800/539-7309, 973/467-8270 (International).
- Serves people affected by paralysis, family & friends, health care professionals, anyone involved in the care of individuals.
- The Christopher and Dana Reeve Paralysis Resource Center is a national source of information for education materials, referrals, and information to promote health, community involvement, and quality of life for all people affected by paralysis including those affected by transverse myelitis. Comprehensive lending library of materials from all over the United States on all topics related to paralysis; also available electronically. They publish the "Paralysis Resource Guide", a free 366 page book containing contacts and connections for people living with spinal cord injury.
National Institute of Neurological Disorders and Stroke
NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824 Phone: (800) 352-9424 or (301) 496-5751
- For access to free Telecommunications Relay Services (TRS) for people with hearing or speech impairments, dial 7-1-1 on your telephone.
Information specific to transverse myelitis:
National Rehabilitation Information Center (NARIC)
8201 Corporate Drive
Landover, MD 20785
Phone: 301-459-5900, 301-459-5984, 800-346-2742
- The National Rehabilitation Information Center (NARIC) is the library of the National Institute on Disability and Rehabilitation Research (NIDRR.). The service collects, catalogs, and disseminates the articles, reports, curricula, guides, and other publications and products of the research projects funded by NIDRR. NIDRR funds more than 250 projects each year that conduct research on a wide range of issues including technology, health and function, independent living, and capacity building.
Transverse Myelitis Association (http://www.myelitis.org)
1787 Sutter Parkway
Powell, OH 43065-8806
- Founded in 1994, the Transverse Myelitis Association’s goal is to improve the quality of life of individuals diagnosed with rare neuroimmunologic disorders, including transverse myelitis.
- Convenes international symposia on rare neuroimmunologic disorders, funds clinician-scientist fellowship
- Website includes information on the symptoms, diagnosis, treatment and prognosis of transverse myelitis; listing of clinical trials, message forum, physician network, and information about support services such as newsletter, family camp and support groups