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Information Resources
For information on other neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute’s Brain Resources and Information Network (BRAIN) at:
BRAIN
P.O. Box 5801
Bethesda, Maryland 20824
(800) 352-9424
www.ninds.nih.gov
In addition, a number of private organizations offer a variety of services and
information that can help those affected by MS. They include:
National Multiple Sclerosis Society
733 3rd Avenue, 6th Floor
New York, NY 10017-3288
(212) 986-3240 or (800) 344-4867
http://www.nationalmssociety.org/index.aspx/
The National Multiple Sclerosis Society (NMSS) provides MS-related services and
information in the United States and is a major source of funds for MS-related basic,
clinical, and health policy research. Staff in the national office’s Information Resource
Center answer some 45,000 inquiries a year. Volunteers and staff in the Society’s local
chapters and branches offer information and referrals, peer support, professional
counseling, loans of medical equipment, physical fitness programs, legislative advocacy,
assistance obtaining benefits, employment assistance, and social or recreational events.
The NMSS raises funds that support a broad research effort into the cause, prevention, and
more effective treatment of MS and into the major health care policy issues that affect
people with MS. The Society’s educational programs provide both information services and
publications. Its national publications include an array of professional/client/family
educational materials and two general interest periodicals,”Inside MS” and
“Inside MS Bulletin.” The NMSS is a member of the International Federation of
Multiple Sclerosis Societies, and can often provide referrals to sources of MS information
in other areas of the world.
Multiple Sclerosis Association of America
706 Haddonfield Road
Cherry Hill, NJ 08002
(856) 488-4500 or (800) 532-7667
www.msassociation.org/
The Multiple Sclerosis Association of America (MSA) has offices in New Jersey, Colorado
Springs, and Washington, D.C. It focuses primarily on mechanisms for coping with
MS-related disabilities. The Association publishes a bimonthly newsletter, “The
Motivator,” which contains feature stories about patients, health tips, medical
updates, and occasionally referral information. Educational information is available
nationwide—in the New Jersey area, the Association lends equipment such as wheelchairs to
patients and holds meetings of patient support groups. MSA’s most recent major undertaking
is a new housing complex for people disabled by MS.
Multiple Sclerosis Foundation, Inc.
6350 North Andrews Avenue
Fort Lauderdale, FL 33309
(954) 776-6805 or (800) 441-7055
www.msfacts.org
Founded in December 1986, the Multiple Sclerosis Foundation, Inc. provides educational
information and supports MS research, including investigations of “alternative”
or holistic therapies. The Foundation has an MS library and acts as a clearinghouse for
information on the disease. Its staff can make referrals to support groups and MS research
centers. Publications include a brochure on MS and a newsletter entitled “MS
Focus.”
Other voluntary health agencies that can provide general information on MS or symptoms
associated with MS include:
National Organization for Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
(203) 746-6518 or (800) 999-6673
www.rarediseases.org
NORD acts as a clearinghouse for information about rare disorders and seeks to foster
communication among voluntary health agencies, the government, the pharmaceutical
industry, academia, and individuals. It encourages, promotes, and supports scientific
research and accumulates and disseminates information on orphan drugs and devices. NORD
publishes a general organization brochure, a pamphlet entitled “Physicians Guide to
NORD Services,” and a newsletter, “Orphan Disease Update,” which includes
research and medical updates, legislative action, personal stories, and letters from
readers.
National Ataxia Foundation
2600 Fernbrook Lane, Suite 119
Minneapolis, Minnesota 55447-4752
(763) 553-0020
www.ataxia.org/
The Foundation sponsors support groups and promotes ataxia research. Its publications
include a newsletter called “Generations” that contains features, research
updates, questions and answers about ataxia, and support group news. Information on
exercise, a guidebook on speech and swallowing problems, a resource book of chapters and
related groups worldwide, and a specialist referral guide are also available.
International Tremor Foundation
7046 W. 105th St.
Overland Park, KS 66212-1803
(913) 341-3880
(888) 387-3667
www.essentialtremor.org
The International Tremor Foundation provides patient and family services, public
education materials, and referrals to support groups and physicians specializing in the
treatment of essential or familial tremor. It publishes a fact sheet describing the
Foundation and a quarterly newsletter containing information on research advances,
questions and answers from readers, and advice on coping with tremor. The Foundation also
supports neurologic research on tremor disorders.
Well Spouse Foundation
FDR Station, Box 827
New York, NY 10150
(212) 685-8815 or (800) 838-0879
www.wellspouse.org
The Well Spouse Foundation provides peer support for spouses of people with MS and
other disorders and promotes individual chapter meetings. It also has advocacy
representatives in several states. It publishes a quarterly newsletter containing feature
and patient stories, chapter news, a “bookshelf,” and coping advice.
In addition to the NINDS, there are several other Federal Government agencies that may
be able to provide information on MS. They are the:
Food and Drug Administration
Public Affairs Office
Rockville, MD 20857
(301) 827-4573
(888) INFO-FDA (463-6332)
www.fda.gov
The Food and Drug Administration (FDA) is the agency within the Federal Government that
regulates drugs and medical devices. FDA staff may be able to provide information on the
status and location of certain clinical trials of experimental medications and other
therapies. It can also provide information about medications already on the market.
National Rehabilitation Information Center
1010 Wayne Avenue, Suite 800
Silver Spring, Maryland 20910-5633
301-562-2400
800-346-2742
www.naric.com
Funded by the Federal Government’s National Institute on Disability and Rehabilitation
Research (NIDRR), the National Rehabilitation Information Center (NARIC) functions as an
information center and maintains a library with more than 30,000 documents on all aspects
of disability and rehabilitation including medical rehabilitation, independent living,
physical disabilities, and special education programs. The Center’s staff collects and
disseminates the results of federally funded research projects. NARIC publishes several
brochures, including a newsletter entitled “NARIC Quarterly” that contains
information about projects funded by NIDRR and new publications produced by NARIC and
other organizations.
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