Down Syndrome -
It’s A Way of Life
Some people might think that Down syndrome is an illness, but people with Down syndrome are not sick. It is just a condition. It is usually caused when the chromosomes don’t split correctly and extra material becomes attached to the 21st chromosome. That extra material may cause people with Down syndrome to have:
* Low muscle tone
* Difficulty speaking clearly
* Short stature
* Heart problems
Most people with Down syndrome have mild to moderate intellectual, cognitive, and related developmental disabilities. They can learn lots of things, but it takes longer to learn and it often requires more hands on learning. Most people with Down syndrome learn to care for themselves and can look forward to a future living in their own home, having a job, lots of friends and many activities in the community.
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Mid Ohio Valley Down Syndrome Association
www.downsyndrome.com
NATIONAL ORGANIZATIONS
National Down Syndrome Congress
National Down Syndrome Society
International Mosaic Down Syndrome Assoc.
COMPREHENSIVE WEB SITES
(These offer a lot of information on varying topics)
Down Syndrome: WWW Page
Riverbend Down Syndrome Parent Support Group
Down Syndrome Information Network
Down Syndrome Educational Trust
Sara G's "Being Into Down Syndrome" Page
Uno Mas! (Temecula Valley DS Group)
Mosaic Down Syndrome on the Web
Downscity Homepage
U.S. LOCAL ORGANIZATIONS
Northeast:
Aim High! (Albany, NY)
Bringing Up Down Syndrome (Southern NJ)
Connecticut Down Syndrome Congress
Down Syndrome Parent Support Group of Genesee County (NY)
Down Syndrome Society of Rhode Island
Down Syndrome Assoc. of Delaware
Massachusetts DS Congress
PODS - Montgomery County (Maryland)
Trisomy 21 of Northern NY
Southeast:
DS Assoc. of Atlanta
Down Syndrome Assoc.of Middle Tennessee
Down Syndrome Assoc. of Northern Virginia
Down Syndrome of Louisville, KY
Gold Coast DS Org. of Broward County, FL
Gold Coast Org. of Palm Beach County, FL
Piedmont DS Support Network (N Carolina)
PODS Angels Support Group in Fort Lauderdale, FL
Triangle Down Syndrome Network (N Carolina)
Up With Downs (Shreveport, LA)
Midwest:
Down Syndrome Assoc. of Central Ohio
Down Syndrome Assoc. of Central Oklahoma
Down Syndrome Assoc. of Greater Cincinnati
Down Syndrome Association of Minnesota
Down Syndrome Assoc. of Northern Indiana
Down Syndrome Assoc. of West Michigan
Down Syndrome Assoc. of Wisconsin
Down Syndrome Development Counsel (N. Ill.)
F.E.D.S. (Sterling Heights, Mich)
Indiana DS Foundation (Indianapolis)
Kansas City Down Syndrome Guild Assoc.
Miami Valley Down Syndrome Assoc. (Dayton, OH)
National Assoc. for Down Syndrome (Chicago)
Oshkosh Down Syndrome Parent Support Group
Riverbend Down Syndrome Parent Support Group (SW Illinois)
SW Chicago Suburban Support Group
The Up Side of Downs of Greater Cleveland
Up With Down (Des Moines)
Wichita Downs Support Group
West & Southwest:
Down Syndrome Assoc. of Houston
Down Syndrome Assoc. of Los Angeles
Down Syndrome Association of Orange County (Cal.)
Down Syndrome Connection of Tucson
Down Syndrome Group of Salt Lake City
DS Network (Phoenix, AZ)
Down Syndrome Organization of Southern Nevada
Down Syndrome Partnership of Tarrant County (Ft. Worth)
Down Syndrome Support Group of the High Desert
Sharing Down Syndrome Arizona
Southern Arizona Network for DS
Rocky Mountain/Northwest:
Colorado Springs Down Syndrome Assoc.
Down Syndrome Outreach of Whatcom County (Wash.)
Mile High Down Syndrome Assoc. (Denver area)
Upside! (Wash.)
Utah Down Syndrome Foundation
Intercontinental US:
Hawaii Down Syndrome Congress
Alaska Chapter of the NDSC
ONLINE MAGAZINES AND NEWSLETTERS
Down Syndrome Quarterly (a multi-disciplinary journal)
Disability Solutions
Down Syndrome Amongst Us
Ohrenkuss, a German magazine by people with DS
MEDICAL RESOURCES
Medical Descriptions of DS
A description of Down Syndrome characteristics by Dr. Siegfried M. Pueschel
General Health Guidelines
Spanish Edition of DSMIG Guidelines
Down Syndrome: Health Issues, from Dr. Len Leshin
Genetics of DS
Dr. Korenberg's Chromosome 21 Phenotype Mapping Project
Online Mendelian Inheritance in Man (OMIM) Gene Map of chromosome 21
What is Mosaic Down Syndrome? by Carol Strom
Animations of Meiosis and Fertilization
Specific Medical Topics in DS
Brain and Tissue Bank for Developmental Disorders
Center for Motor Behavior in Down Syndrome
Dental Care in Down Syndrome: A Review of the Literature by Sindoor Desai, DDS
Growth Charts for Children with Down Syndrome
Hip Instability in Down Syndrome by Kim Voss
My Brother and Me: about Down Syndrome and Alzheimer's
OTHER RESOURCES FOR PARENTS
Breastfeeding a Child with Down Syndrome, by the Nursing Mothers Assoc. of Australia
Breastfeeding and Down Syndrome, by the La Leche organization
Communicating Partners, Dr. James McDonald's program
Diagnosis: Down Syndrome (a collection of stories for new parents of children with DS)
Down Syndrome - For New Parents (by The Paul Family)
Love and Learn Tapes for Teaching Reading
Parents' Resource - For new parents (by the Edwards Family)
Welcoming New Babies, by Pam Wilson
MetLife's "Division of Estate Planning for Special Kids"
Creative Exchange Music Therapy
OT Exchange: a site for pediatric Occupational Therapists and parents who utilize OTs
NON-PROFIT FOUNDATIONS
The Possible Dream Foundation
Down Syndrome Research Online Advocacy Group
The Lindsey Rae Foundation
Annie Forts' Up Syndrome Fund, Inc.
The Karen Gaffney Foundation
Foundation 21 (Australia)
SCHOOLS / EDUCATIONAL COMMUNITIES / CAMPS
Camphill Soltane - Pennsylvania
Pathfinder Village - New York
Green Oaks School - Arlington, TX
Down Home Ranch - Austin, TX
OTHER NOTABLE SITES
Adult Artists with DS
Chris Burke Fan Club Website
Sujeet Desai: Pianist Extraordinaire
Michael Jurogue Johnson: a painter and illustrator with DS
Raymond Hu's Website: his story and paintings
Jane Cameron, Sunshine Girl
Internet Miscellany
DS International Swimming Organisation
Afraid to Look Down: about the play by Cullen Douglas, a father of a boy with DS
Adult Sibs of Individuals with MR/DD (New York City)
Down Syndrome Web Ring
The Marketplace
"Beautiful Faces" Calendars and Note Cards
Ups & Downs - An Anthology: seventeen individual stories written by families of children with DS
Dolly Downs (from Camp Venture)
Downi Creations (more dolls)
TLC Kids Company: educational materials for children with disabilties
C-wide: Dolphin Trips
Photographers of Children with Special Needs
Special Kids Photography
Homages, Memorials and Recollections
Mountain View Elementary School's DS Site
MAILING LISTS/NEWSGROUPS
http://www.ds-health.com/lists.htm |
