Down Syndrome

Disability/Illness Description:

Down syndrome is a chromosomal disorder characterized by the presence of an extra #21 chromosome. Instead of having 46 chromosomes in each of his/her cells, a person with Down syndrome has 47. This extra chromosome changes the orderly development of the body and brain.

Associations/Groups:

Down Syndrome Resource Group of Western Massachusetts (DSRG)
The Down Syndrome Resource Group of Western Massachusetts was started in September 1999 by parents who had a common interest in sharing information and resources in caring for their children. The group provides information about family support, resources, parent training, and social opportunities.
c/o The Association for Community Living
1 Corando Drive, Suite 2
Springfield, MA 01104-3211
Phone: 413-562-7395
Email: tanya.wheeler24@gmail.com

Massachusetts Down Syndrome Congress (MDSC)
The MDSC offers a broad array of programs to serve people with Down syndrome and their families throughout the state.
20 Burlington Mall Road, Suite 261
Burlington, MA 01803
Phone:  781-221-0024
Fax: 781-221-0011
Email: mdsc@mdsc.org

National Down Syndrome Congress (NDSC)
national resource of support and information for anyone touched by or seeking to learn about Down syndrome, from the moment of a pre-natal diagnosis through adulthood. Guide for New and Expectant Parents
30 Mansell Court, Suite 108
Roswell, GA 30076
Phone: 770-604-9500
Toll Free: 800-232-6372
Fax: 770-604-9898
Email: info@ndsccenter.org

National Down Syndrome Society (NDSS)
national advocate for the value, acceptance and inclusion of people with Down syndrome.
8 E 41st Street, 8th Floor
New York, New York, 10017
Helpline: (800) 221-4602
Email: info@ndss.org

National Association for Down Syndrome
supports all persons with Down syndrome in achieving their full potential.
1460 Renaissance Drive, Suite #405
Park Ridge, IL 60068
630-325-9112
Email: info@nads.org

Other Information:

Down Syndrome Program of Mass General Hospital for Children
The Down Syndrome Program at Massachusetts General Hospital provides care for infants, children, adolescents and adults with Down syndrome. It integrates state-of-the-art resources with compassionate, comprehensive care. Its multidisciplinary approach includes physicians, a nutritionist, a social worker, a program coordinator,a resource specialist and other healthcare professionals specific to each age group. National experts from Massachusetts General Hospital, MassGeneral Hospital for Children and Massachusetts Eye and Ear Infirmary work together to provide care for people with Down syndrome.
Yawkey Center for Outpatient Care, Suite 6C
55 Fruit Street
Boston MA 02114
Phone: 617-643-8912
Email: DownSyndrome@partners.org

Down Syndrome – US National Library of Medicine

“Parents’ First Call”, sponsored by the Massachusetts Down Syndrome Congress, is a volunteer, state-wide group of informed and involved parents who make themselves and their knowledge available to parents of children newly diagnosed with Down syndrome. Services Free and confidential. Call 1-800-664-6372.

Spanish Speaking Information:
The book, “Bebes con Sindrome de Down”, by Susan Skallerup, is available through Barnes and Nobles online either through booksellers like Amazon or Barnes & Noble

A Promising Future Together – A Guide for New and Expectant Parents

Down Syndrome – March of Dimes

Facts about Down Syndrome – CDC
If a person would like to talk to a Spanish-speaking family who has a child with Down syndrome, they can call the National Down Syndrome Congress, who will help locate such a family: 800-232-6372 (NDSC).

The Down Syndrome Transition Handbook¬† Charting Your Child’s Course to Adulthood
Author- Jo Ann Simons
Publisher Woodbine House, 2010.
There is practical tips and step-by-step instructions to help families envision their child’s future, develop a transition plan, and implement it. There is a chapter dedicated to post secondary education and some of the new federal funding possibilities.

 

Fact Sheet last updated on: 1/18/2017