Down syndrome

Down syndrome & related chromosomal conditions

National Down Syndrome Society: 666 Broadway, New York, NY 10012-2317; Phone: 800.221.4602 or 212.460.9330, Fax: 212.979.2873
E-mail: info@ndss.org; Web site: http://www.ndss.org

National Down Syndrome Congress: 7000 Peachtree-Dunwoody Road, N.E., Lake Ridge 400 Office Park Building #5 - Suite 100
Atlanta, GA 30328-1655
Phone: 800.232.NDSC or 770.604.9500
E-Mail: NDSCcenter@aol.com
Down Syndrome Research Foundation & Resource Centre: 3580 Slocan Street, Vancouver, BC, Canada V5M 3E8; Phone: 604.431.9694 or 1.888.464.DSRF (British Columbia only), Fax: 604.431.9248 E-mail: dsrf@sfu.ca; Web page: http://www.dsrf.org (Spanish, French, and Korean materials available Fall 1998)
Babies with Down Syndrome - for parents whose baby has been recently diagnosed with Down Syndrome or patients continuing affected pregnancies, information and links to sources of support
Welcoming Babies with Down Syndrome, English: Bienvenidos Bebes con Sindrome de Down,Spanish; Accueillir les bébé trisomiques, French; Also available in Chinese, Swedish (Swedish Down Syndrome web site)
Local and Regional Groups:

National Association for Down Syndrome (serves Chicago area), P.O. Box 4542, Oak Brook, IL 60522.4542
Down Syndrome Guild of Greater Kansas City
Riverbend Down Syndrome Parent Support Group, Southwestern Illinois
Tidewater Down Syndrome Association - information / links to information
UPSIDE! Down Syndrome Society - individuals, families, and friends
Parent Assistance Committee on Down Syndrome, 208 Lafayette Ave., Peekskill, NY 10566, Phone: 914.739.4085
Association for Children with Down Syndrome, 2616 Martin Ave., Bellmore, NY 11710-3169, Phone: 516.221.4700, Fax: 516.221.4311

International Web pages

Worldwide list (Argentina, Australia, Brazil, Canada, Chile, European Down's Syndrome Association, France, Iceland, Israel, Italy, Malta, Mexico, The Netherlands, New Zealand, The Philippines, South Africa, United Kingdom, United States) [established in 1995, no longer maintained]
International Sites (Africa, Europe, Asia, Australian & New Zealand Sites, South America, and North America)
Arbeitskreis Down syndrome e.V. (Germany)
Uno Mas! Down Syndrome Online
Canadian Down Syndrome Society, Box 52027, Calgary, Canada CN T2E 8K9, Phone: 403.253.5825
Down's Heart Group, United Kingdom
Assoiação de Pais de Filhos com Síndrome de Down, Brazil
Down Syndrome Association of Toronto, Canada

Adoption

Down Syndrome Adoption Exchange, Janet Marchese, 56 Midchester Ave., White Plains, NY 10606, 914.428.1236 Not an adoption agency, but work with local agencies to place children
Jewish Children's Adoption Network: 303.573.8113. The directors, Steve and Vicki Krausz, have adopted two babies with Down Syndrome, and have facilitated many other adoptions nationwide
Greater Cincinnati Down Syndrome Association, Robin Steele, head of the Down Syndrome Adoption Awareness Committee, placement of children with Down syndrome. Phone 513.554.4485, Fax 513.554.4486
Spaulding for Children, Chelsea, MI (near Ann Arbor) specialize in adoption of children with special needs
Shattered Dreams-Lonely Choices Birthparents of Babies with Disabilities Talk About Adoption, Joanne Finnegan, 1993, Bergin & Garvey, ISBN 0897892860

Mosaic Down Syndrome

Mosaic Down Syndrome booklet, Colleen-Jackson Cook, Ph.D., 804.828.9632, jacksonc@gems.vcu.edu
Families with a child with mosaic Down syndrome: Peggy Vaughn, 207 King George Rd., Greenville, SC 29615
International Mosaic Down Syndrome Association (IMDSA)

Also See:

Down Syndrome: Health Issues and Medical Articles (by pediatrician, LLeshin, who has a child with Down Syndrome), including tips for parents, growth charts, menstrual issues, growth charts, recurrance risks
Growth Charts for Children with Down Syndrome
Down Syndrome WWW Page, compiled from contributions of members of the Down Syndrome Listserv, others
Types of Down Syndrome: Risk and Recurrence Risk of Down Syndrome, PJ Benke, Pediatric Genetics, University of Miami School of Medicine, Miami, FL
What to say to new parents with a child with Down Syndrome (or other condition)
Yahoo Listing of Down Syndrome Pages

National organizations with information on genetic conditions or birth defects - variety of resources
March of Dimes Prenatal Information on pregnancy Issues including Amniocentesis and Chorionic Villus Sampling (CVS), Maternal Blood Screening , Pregnancy over age 35

Other Chromosomal Conditions

Other resources:

Growth Charts, Down Syndrome
Welcome to Holland by Emily Perl Kingsley, also available in Spanish and Chinese
Welcome to Holland, and interview with author
Babies with Down Syndrome: A New Parents' Guide, KStray-Gundersen, available in Spanish summer 1998, Woodbine House, 800.843.7323, website www.woodbinehouse.com
Dolly Downs, Dolls, Camp Venture, Inc., Nanuet, NY 10954 845.624.3862
Down Syndrome Dolls, HEST Toys
Communication Skills in Children with Down Syndrome: A Guide for Parents, L Kumin
Medical & Surgical Care for Children with Down Syndrome: A Guide for Parents, Mattheis, Eberly, Williams
Teaching Reading to Children with Down Syndrome: A Guide for Parents & Teachers, PL Oelwein
Teaching Your Down's Syndrome Infant: A Guide for Parents, MJ Hanson, University Park Press, Baltimore, 1977
Life as We Know It, M Berube
Count Us in: Growing up with Down Syndrome, M Levitz
Down Syndrome: A Resource Handbook, CTingey
A Parent's Guide to Down Syndrome: Toward A Brighter Future, SPueschel, Paul H. Brookes Publishing Co., MD, 1990, ISBN 1-55766-060-3
Down Syndrome: Growing and Learning, SPueschel, CCanning, et. al., 1978, Sheed Andrews and McMeel, Inc., UPS, KS, ISBN 0-8362-2804-9
Down Syndrome: The Facts, M Selikowitz, Oxford Univ. Press, 1990, ISBN 0-19-26-18-72-5
Down's Syndrome: An Introduction for Parents, C Cunningham, 1987, Brookline Books, MA, ISBN 0-914797-52-2
The Young Child With Down Syndrome, SM Pueschel, Human Sciences Press, Inc. NY, 1984, ISBN 0-89885-120-3
Down Syndrome, Smith & Wilson
Expecting Adam, Martha Beck, couple who find their fetus has Down syndrome and decide to continue the pregnancy, 1998
Article about parents who have a baby with Down Syndrome without prenatal diagnosis, Michael Berube, Harper's Magazine, December 1994, pp. 41-51
Breastfeeding a Baby with Down Syndrome
Down Syndrome, OMIM (Online Mendelian Inheritance in Man)

To locate a genetic counselor or clinical geneticist in your area:

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