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Mental
Retardation Resources
What
Are Sources of Information and Support?
Several publications,
organizations, and support groups exist to help individuals, teachers, and
families to understand and cope with learning disabilities. The following
resources provide a good starting point for gaining insight, practical
solutions, and support. Further information can be found at libraries and
bookstores.
References
Cunningham, C. (1996). Understanding Down syndrome: An introduction for
parents. Cambridge,MA: Brookline. (Telephone: 1-800-666-2665.)
Pueschel, S.M. (Ed.). (1995). A parent's guide to Down
syndrome: Toward a brighter future. Baltimore, MD: Paul H. Brookes.
(Telephone: 1-800-638-3775.)
Uhruh, J.F. (1994). Down syndrome: Successful parenting of
children with Down syndrome. Eugene, OR: Fern Ridge Press. [Telephone: (503)
485-8243.]
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Books
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Woodbine House (at 1-800-843-7323) publishes a series of
books on Down syndrome, including:
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Differences in common: Straight talk about mental
retardation, Down syndrome, and life
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Communication skills in children with Down syndrome: A guide
for parents
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Medical and surgical care for children with Down syndrome: A
guide for parents
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Babies with Down syndrome: A new parent's guide
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Teaching reading to children with Down Syndrome
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Gross motor skills in children with Down Syndrome
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Fine motor skills in children with Down syndrome
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Organizations
The Arc (formerly the Association for Retarded Citizens of the
United States)
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
(301) 565-3842
E-mail: Info@thearc.org
Web address: www.thearc.org
For publications: www.TheArcPub.com
Administration on Developmental Disabilities
Administration for Children and Families
U.S. Department of Health and Human Services
Mail Stop: HHH 300F
370 L’Enfant Promenade
Washington, DC 20447
(202) 690-6590
http://www.acf.dhhs.gov/programs/add/
American Speech, Language and Hearing Association
10801 Rockville Pike
Rockville, MD 20852
1-800-498-2071 or 1-888-321-ASHA
http://www.asha.org/
FRAXA Research Foundation, Inc.
45 Pleasant Street
Newburyport, MA 01950
978-462-1866
FRAXA is a tax-exempt public charity, run by parents of children with Fragile
X syndrome. FRAXA's goal is to accelerate research aimed at the specific
treatment with Fragile X syndrome by direct funding of promising research
projects and by raising awareness of this disease.
Learning Disabilities Association of America
4156 Library Road
Pittsburgh, PA 15234-1349
(412) 341-1515 or 1-888-300-6710
http://www.ldanatl.org/
March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
(914) 428-7100
1-800-MODIMES (1-800-663-4637)
http://www.modimes.org/
Mid-Atlantic Regional Human Genetics Network (MARHGN)
(genetic counseling)
c/o Stacy Schmidt, MARHGN Coordinator
Christiana Care Health System
Maternal and Fetal Medicine – Genetics, Room 1988
4755 Ogletown-Stanton Road
P.O. Box 6001
Newark, DE 19718
(302) 733-3072
http://www.pitt.edu/~marhgn/
National Information Center for Children and Youth with
Disabilities
P.O. Box 1492
Washington, DC 20013-1492
1-800-695-0285
(202) 884-8200
http://www.nichcy.org/
National Down Syndrome Congress
7000 Peachtree-Dunwoody Road, NE
Building 5
Suite 100
Atlanta, GA 30328-1662
(800) 232-6372; (770) 604-9500
E-mail: NDSCcenter@aol.com
Web address: www.ndsccenter.org
National Down Syndrome Society
666 Broadway, 8th Floor
New York, NY 10012
(212) 460-9330
(1-800) 221-4602 (Toll Free)
E-mail: info@ndss.org
Web address: www.ndss.org
The National Fragile X Foundation
PO Box 190488
San Francisco, CA 94119
510-763-6030
1-800-688-8765
Provides assistance and advice to parents and professionals, works to increase
awareness and encourage research.
Publishes and sells brochures, information packets, a
quarterly newsletter, and the International Fragile X Directory that provides
a list of Fragile X testing sites, resource centers, and groups worldwide.
National Society of Genetic Counselors
233 Canterbury Drive
Wallingford, PA 19086
(610) 872-7608
http://www.nsgc.org/
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