Down Syndrome                       
Introduction :: Symptoms :: Physical features ::  Causes ::  forms of Down’s  Syndrome :: Diagnosis :: Treatment :: Leading a fulfilling life
Complications :: Prevention :: Diagnostic tests :: Decisions

Introduction                              New course for Down's Syndrome Students

Human cells normally contain 23 pairs of chromosomes. Chromosomes are the parts of body cells that carry inherited information - the characteristics that are passed to you from your mother and father.

A chromosomal disorder means there is a change in the normal number of chromosomes. This can mean that physical and mental development is impaired and can result in learning difficulties and health problems.

Down’s Syndrome is the most common chromosomal disorder and one of the most common causes of learning difficulties.

Named after the first person that described it, Dr J L Down, the condition affects one in every 1,000 people. Some are more severely affected than others.
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Symptoms

People with Down’s Syndrome have lots of different characteristics.

There are thought to be up to 120 features of Down’s Syndrome but many children have no more than six or seven of them.


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Physical features

Babies with Down’s Syndrome usually weigh less than average at birth and are usually shorter than average as adults.

*       Children with Down’s Syndrome often have a rounded face, with a flat profile (the face looks flat when you view it from the side). The back of the head is slightly flattened (this is called brachycephaly) and the eyes tend to slant upwards.

*       There are small folds of skin that run vertically between the inner corner of the eye and the bridge of the nose (peicanthic folds) and this can give the impression of crossed eyes (squint). There may be white or yellow speckling around the rim of the iris (coloured part of the eye). These are called Brushfield spots.

*       Children with Down’s Syndrome often have straight, soft hair. As children they may have an extra fold of skin over the back of the neck and as adults, short broad necks.

*       People with Down’s Syndrome often have smaller than average mouths with a bigger than average tongue that may stick out. 

*       The hands may be broad with short fingers; the little finger may only have one joint instead of two and be slightly curved. The feet are often stubby with a wide space between the first and second toes.

*       Many people with Down’s Syndrome have poor muscle tone (hypotonia). This muscular floppiness occurs in the limbs and neck and usually improves with age.

Children with Down’s Syndrome learn new skills more slowly than other children and generally develop at a slower rate, meeting their ‘developmental milestones’ such as walking or talking later. They may progress in stops and starts and may not fully catch up with other children their age. Often, a child with Down’s Syndrome will not start to use language until his or her third year and may use some sign language before talking. 

With treatment and support, the average life expectancy of someone with Down’s Syndrome is about 60 years.

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Causes

We inherit genes from our parents and they determine our characteristics. Our genetic code is found in parts of our cells called chromosomes. Down’s Syndrome is caused by an extra number 21 chromosome. It can come from either the mother or the father and there is no way to predict it.

The genes that the extra number 21 chromosome contains cause extra proteins to be made, and this disturbs normal growth. Cells do not divide as rapidly as normal and this leads to a smaller than average baby. As the baby develops, cells do not move around in the usual way, which means that the body parts do not form normally, especially the brain. This means that the baby will have fewer brain cells and a different brain formation.

The likelihood of having a baby with Down’s Syndrome increases with the age of the mother, and is higher after the age of 35. However, more babies with Down’s Syndrome are born to younger mothers, because overall more babies are born to women under 35.

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There are three forms of Down’s Syndrome:

Trisomy 21 – 94% of people with Down’s Syndrome have an extra chromosome 21 in every cell of their body. The two number 21 chromosomes do not separate but stay together in one cell (this is called non-disjunction). This type of Down’s Syndrome is often linked to the age of the mother.

Translocation – In 4% of cases, Down’s Syndrome is due to an extra part of chromosome 21 (rather than a whole extra chromosome). It occurs when small bits two chromosomes break off and stick together. Parental age is not a factor. In one third of these children a parent is found to be a ‘carrier’ of Down’s Syndrome and so has a higher than normal chance of having a child with the syndrome. But in two thirds the occurrence of Down’s Syndrome is random.

Mosaicism – In 2% of cases, there is an extra whole 21 chromosome in only some of the body cells and the rest of the cells are normal. These children are less noticeably affected and have less obvious physical characteristics. They may have little or no intellectual difficulties.

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Diagnosis

Diagnosis of Down’s Syndrome is made shortly after birth and is usually based on the appearance of the baby.

The diagnosis should be made as soon as possible, with both parents present. Parents should be encouraged to ask questions. At this stage, doctors will not be able to tell exactly how and to what extent the baby will be affected.

Diagnosis is confirmed by a chromosome test (blood test). 

In cases of translocation (where Down’s Syndrome is due to an extra part of chromosome 21) both parents should also have a chromosome test to see if either one is a carrier (carries the faulty gene, but does not have symptoms of the condition).

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Treatment

There is no cure for Down’s Syndrome but a range of treatment and support is available to improve the quality of life of people with the condition. Many people with Down’s Syndrome benefit from specialized education, occupational therapy, physiotherapy, speech therapy and a dietician.

Tests for baby and beyond

If your baby is diagnosed with Down’s syndrome they will have a physical examination at birth, another at six weeks old and then annually. Part of the newborn examination will include an echocardiogram, when the heart and blood vessels are examined. This is because children with Down’s Syndrome are more likely to have heart defects.

It is important that your child has regular checks to monitor growth and to detect health problems early. Such problems may do more damage if they are untreated.

Children with Down’s Syndrome should have regular vision and hearing tests. This is because they are at higher risk of long sightedness (hypermetropia) and short-sightedness (myopia), and glue ear which can result in hearing loss.

They should also have a thyroid test every year and a dental check at least every two years. This is particularly important for children with heart abnormalities because a tooth infection can cause bacteria to grow in the heart.

Children with Down’s Syndrome should have the usual childhood immunizations

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Leading a fulfilling life

Children with Down’s Syndrome can benefit from specialized educational program and therapy as well as physiotherapy, occupational therapy and speech therapy. Some may thrive better in a specialized school and some in a mainstream school. Encourage your child and let them do things for themselves. With appropriate education, therapy, and social support, the majority of people with Down syndrome can lead fulfilling and productive lives. They can live independently and have personal relationships.

Some children may need constant care and support from family or careers. For advice, guidance and support see your midwives, social worker, counselor or health visitor. You can also attend special health and development clinics. Parents of children with Down’s Syndrome may like to join a parents’ group so they can talk to other parents, share experiences and get support

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Complications

Certain conditions are more common in people with Down’s Syndrome. Most of these are usually mild and easy to treat. The more severe conditions only affect about 1 in 100 children with Down syndrome.

Heart problems : 40-50% of children with Down’s Syndrome have heart problems such as a heart defect, murmur or hole in the heart. Many of these children will need surgery. 

Upper respiratory tract infections: these are infections that affect the ear nose and throat and include coughs, colds, middle ear infections and chest infections. Your child should always be examined by your GP to see if the infection is bacterial or viral.

Dry skin, obesity, diabetes.

Lower immune system: this means people with Down's Syndrome are prone to catching infections.

Eye problems: these can include a squint, nystagmus (where the eyes move to and fro rapidly because the brain does not control the movement of muscles around the eyeball), cataracts (clouding of the eye lens) and keratoconus (when the cornea becomes more conical in shape).

Teeth problems: children with Down’s Syndrome keep their milk teeth longer and get their adult teeth later. Parents should take extra care to avoid sugary foods and drinks, and consider giving extra fluoride to protect teeth.

Hypothyroidism (under-active thyroid gland): Congenital hypothyroidism (you are born with an under-active thyroid gland) this affects about 1 in 150 children with Down’s Syndrome and may go unnoticed at first. Acquired (you develop an under-active thyroid gland) hypothyroidism this affects 1 in 5 adults and 1 in 10 children. Hypothyroidism needs to be detected and treated (with hormones) as soon as possible, because it can result in serious and permanent intellectual problems.

Intestinal problems: 10-15% of children with Down’s Syndrome have duodenal atresia, when narrowing of the small intestine causes vomiting because food cannot travel into the intestine from the stomach.

Hirschsprung disease: the lack of nerves in the rectum can cause constipation in babies and infants, but this can be treated.· Leukaemia is more common later in life (1 in 100).

Klinefelter syndrome: 1 in 100 boys with Down’s Syndrome have an extra X chromosome in addition to the extra number 21 chromosome. They will have smaller than average testicles, will not go through the normal changes during adolescence and will be infertile. This syndrome can be treated with male hormones.

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Prevention

Screening

All pregnant women, whatever their age, should be offered screening before 20 weeks. These tests are all optional.

The triple test is performed after 14 weeks of pregnancy but before 20 weeks. The best time for the most accurate results is between 16-18 weeks. It is a blood test that tests for the hormone Human Chorionic Gonadotrophin (hCG), the protein alpha-feto (AFP ) and the protein unconjugated oestriol (uE3 ).

Low levels of AFP, low levels of uE3 or high levels of hCG in the blood may mean a higher than average risk of having a baby with Down’s Syndrome.

The results of the blood test are combined with the mother’s age to estimate the risk of Down’s Syndrome. The results will be either screen negative (risk is less than 1 in 250) or screen positive (risk is more than 1 in 250). A screen positive test result does not mean that there is an abnormality. It only means that there is an increased risk and further tests may be needed to be more accurate.

Results are not 100% accurate. At the moment, less than 5 in 100 people have a false-positive result (at least 60 out of 100 cases of Down’s Syndrome are detected). By April 2007, this false-positive rate should be less than 3 in 100 (more than 75 out of 100 cases of Down’s Syndrome will be detected).

The quadruple test is similar to the triple test but also tests inhibin A. This is only used if you are at a very high risk of having a baby with Down’s Syndrome.

The nuchal translucency scan (taken between 10 and 13 weeks of pregnancy) is only available in certain hospitals. It involves measuring the width of the baby’s spinal cord.

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Diagnostic tests

An amniocentesis test involves taking a sample of the amniotic fluid that surrounds the unborn baby. It is carried out with local anaesthetic using a thin needle to remove the amniotic fluid. This contains some of the baby’s cells and can be used to try and diagnose Down’s Syndrome. Results take 3-4 weeks. There is a 1 in 200 chance of miscarriage with this test.

A chorionic villous sampling (CVS) test involves taking a sample of tissue from the placenta to measure certain markers in the blood. It is carried out under local anaesthetic using a thin needle passed into the wall of the abdomen or by inserting a small tube through the vagina and the cervix (neck of the womb) to remove some of the chorionic villi (placental tissues). Results take 10-14 days. There is a 1 in 100 chance of miscarriage with this test.

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Decisions

Although results are not 100% accurate, it can be a worrying and difficult time if your diagnostic tests indicate a high risk of having a baby with Down’s syndrome. You will be encouraged to have some counselling and to discuss the results with a doctor, nurse or midwife and your partner. There are a number of options available to parents who are expecting a baby with Down’s Syndrome.

http://www.nhsdirect.nhs.uk

NHS Direct Online Health Encyclopedia

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Links under Down Syndrome category

down syndrome

1.ABA Materials      http://www.aba-materials.com
"Easy-to-use software has helped many thousands of children with Autism, PDD, Down Syndrome, Dyslexia, ADD/ADHD, Language impairments, Hearing impairments and Visual impairments. It is used by special schools, mainstream schools, speech and language professionals and parents worldwide working at home with their children."

2.Down Syndrome Empowerment Network      http://downsyndrome.com
Composed of web site contributions from experienced professionals and knowledgeable parents who are subscribers to the Down Syndrome listserv and newsgroup.

3.Love and Learning      http://www.loveandlearning.com
Offers an easily do-able, loving manner of teaching that values the individuality of each child and helps nurture self-esteem. Technique and materials (video tapes, audio tapes, books and computer programs) help Infants and Toddlers with Language and Reading development.

4.March of Dimes      http://www.modimes.org
To improve the health of babies by preventing defects and infant mortality.

5.National Association for Down Syndrome (NADS)      http://www.nads.org
Provides critical counseling and support for parents of newly diagnosed infants with Down syndrome as well as advocacy, referral and information services.

6.National Down Syndrome Congress      http://www.ndsccenter.org
National advocacy organization for Down syndrome and to provide leadership in all areas of concern related to persons with Down syndrome.

7.National Down Syndrome Society (NDSS)      http://www.ndss.org
Increases public awareness about Down syndrome and discover its underlying causes through research, education and advocacy.

Web Pages

 Associação Carpe Diem (Portugese) - http://www.carpediem.com.br
Carpe Diem Association is dedicated to the inclusion of people with Down Syndrome , they work with children and youngters to include them both in schools and the job marketplace

 Down's Heart Group - http://www.downs-heart.downsnet.org
Site featuring support and information relating to Down's Syndrome and congenital heart disease. Parent friendly information on common heart defects together with other useful topics.

 Down Syndrome - Epilepsy Foundation - http://members.aol.com/dsepilepsy/org.htm
Research into the dual diagnoses of Down syndrome and epilepsy. Emphasizes nutritional and non-medical interventions.

 Down Syndrome Educational Trust - http://www.downsed.org/
Exists to make a positive difference for individuals with Down syndrome worldwide by conducting original scientific research with practical outcomes, disseminating current and accurate information and advice, and by providing independent, specialist consultancy and educational services.

 Down Syndrome for New Parents - http://www.downsyn.com/
Dedicated to providing parents with information about Down syndrome.

 Down Syndrome Information Network - http://www.down-syndrome.net/
Information and online services for families, professionals and researchers interested in Down syndrome.

 Down Syndrome Medical Interest Group (UK) - http://www.dsmig.org.uk
Information for healthcare professionals, including UK-specific growth charts, guidelines, and medical information library.

 Down Syndrome Worldwide Page - http://www.nas.com/downsyn/
Composed of contributions from experienced professionals and knowledgeable parents who are subscribers to the Down Syndrome listserv and newsgroup.

 Down Syndrome: Health Issues - http://www.ds-health.com/
A collection of medical essays and abstracts for parents of children with Down syndrome.

 DownsCity - http://www.downscity.com/
Comprehensive resource of information on Down Syndrome and Regional Support Groups. Marketplace is a common shopping area for products and services supporting the Down syndrome community.

Fundacio Catalana Down Syndrome 21 Trisomy - http://www.fcsd.org/eng/index.htm
Down syndrome activities for families and professionals, lectures, forums about down syndrome and down syndrome medical review, ebooks and links

Growth Charts for Children with Down Syndrome - http://www.growthcharts.com/
Printable growth charts for children with Down Syndrome. Charts included are for height, weight, and head circumferences.

 HADSA, Down Syndrome support group in the Iowa City Area - http://www.hadsa.org
Resources and support for individuals, families, professionals in the Iowa City area affected by Down Syndrome. We hope to enhance the quality of life for all individuals with Down Syndrome.

 National Down Syndrome Society (NDSS) - http://www.ndss.org
NDSS was established to increase public awareness, assist families, and sponsor scientific research.

 Uno Mas! Down Syndrome Online - http://www.unomas21.com/
This site exists to celebrate the uniqueness of people with Down Syndrome, and to offer support to new and expectant parents.

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Categories

·         National Organizations

·         Comprehensive Web Sites

·         United States Local Organizations

·         International Web Sites

·         Online Magazines and Newsletters

·         Medical Resources        Other Resources for Parents

·         Non-Profit Foundations

·         Educational Communities

·         Other Notable Sites dealing with DS

·         Family and Individual Home Pages

NATIONAL ORGANIZATIONS

National Down Syndrome Congress
National Down Syndrome Society
International Mosaic Down Syndrome Assoc.

COMPREHENSIVE WEB SITES

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

U.S. LOCAL ORGANIZATIONS

Northeast:
Aim High! (Albany, NY)
Bringing Up Down Syndrome (Southern NJ)
Bucks County DS Interest Group (PA)
Connecticut Down Syndrome Congress
Down Syndrome Advocacy Foundation (Suffolk County, Long Island)
Down Syndrome Assoc. of Westchester, NY
Down Syndrome Group of Western PA
Down Syndrome Parent Network of Eastern PA
Down Syndrome Parent Support Group of Genesee County (NY)
Down Syndrome Society of Rhode Island
Down Syndrome Assoc. of Delaware
Down Syndrome Assoc. of Memphis
Friends of Trisomy 21 Center (Philadelphia)
Hudson Valley Down Syndrome Assoc. (NY)
Massachusetts DS Congress
PODS - Montgomery County (Maryland)
Network 21 (Central NJ)
Trisomy 21 of Northern NY

Southeast:
Down Syndrome Assoc. of Atlanta
Down Syndrome Assoc. of Hampton Roads (SE Virginia)
Down Syndrome Association of the Lowcountry Charleston, SC
Down Syndrome Assoc.of Middle Tennessee
Down Syndrome Assoc. of New Orleans
Down Syndrome Assoc. of Northern Virginia
Down Syndrome Assoc. of Roanoke, Virgina
DS Family and Friends (Little Rock, AR)
Down Syndrome of Louisville, KY
Gold Coast DS Org. of Broward County, FL
Gold Coast Org. of Palm Beach County, FL
Gulf Coast DS Society (Southern Miss.)
PC Downies (Panama City, 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)

Middle:
Down Syndrome Assoc. of Central Ohio
Down Syndrome Assoc. of Central Oklahoma
Down Syndrome Assoc. of Greater Cincinnati
Down Syndrome Assoc. of Greater St. Louis
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)
NDSS Nebraska (Omaha)
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 Central Texas
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 Guild of Dallas
Down Syndrome Group of Salt Lake City
Down Syndrome League of the Greater Bay Area
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
Down Syndrome Assoc of Ventura County (Cal.)
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.)
Up With Down Assoc. (Utah County)
Utah Down Syndrome Foundation

Intercontinental US:
Hawaii Down Syndrome Congress
Alaska Chapter of the NDSC

INTERNATIONAL SITES

Argentina:
     Asociacion Down de Avellaneda
     Asociación Síndrome de Down de la República Argentina
Australia:
     DS Society of South Australia
     DS Assoc. of New South Wales
     DS Assoc. of Victoria
     DS Assoc. of Western Australia
     Australian Capital Territory DS Assoc.
     DS Assoc. of Queensland
Austria: Infoplattform Down-Syndrom Österreich
Bahrain: Bahrain Down Syndrome Society
Brazil: Fundacao Sindrome de Down
Canada:
     Calgary DS Assoc.
     Canadian Down Syndrome Society
     DS Assoc. of Metropolitan Toronto
     Down Syndrome Research Foundation and Resource Centre
     Manitoba DS Society Home Page
     Newfoundland and Labrador DS Society
     Assoc. du Syndrome de Down de L'estrie (Quebec)
Czech Republic: Spolecnost Downova syndromu
Denmark:
     Forældre til mongolbørn i København
     Landsforening Downs Syndrom
Ecuador: Frutos-Integral Attention Center
Egypt: European Down Syndrome Assoc. (EDSA)
Finland: Downin oireyhtymä
France: F.A.I.T 21 et G.E.I.S.T 21
Germany:
     Down syndrome network Germany
     Deutschen Down-Syndrom InfoCenter
Honduras: Down Syndrome Foundation
Hong Kong: Down Syndrome Association
Iceland: Félag áhugafólks um Downs-heilkenni
India: Down's Syndrome Federation of India
Ireland:
     Down Syndrome Ireland - Main branch
     Down Syndrome Ireland - Mayo Branch
Italy:
     L'Associazione Italiana Persone Down
     Associazione Genitori Bambini Down
     Centro Bresciano Down
     Pordenone DS Assoc. (English)
     CE.N.TR.O. 21 -- Bologna
     Sindrome di Down
Japan: Japan Down Syndrome Network (English version)
Luxembourg: Trisomie 21 Lëtzebuerg a.s.b.l. (in French and German)
Malta: Down Syndrome Assoc. of Malta
Maylasia: Kiwanis Down Syndrome Centre under construction
Mexico:
     Resources in Mexico
     Instituto Irapuatense Down, A.C.
     Fundación John Langdon Down, A.C.
Netherlands: Stichting Down's Syndroom
New Zealand: New Zealand DS Assoc.
Nigeria: Down Syndrome Association of Nigeria
Norway:
     Downsnett Norge
     Marihøna
Phillipines:Down Syndrome Assoc. of the Philippines
Puerto Rico: Fundación Síndrome Down
Romania: Sindrom Down
Russia:
     Down Syndrome Assoc. of Russia
     Downside Up (this is a UK charity for Russian children with DS)
Singapore: Singapore Down Syndrome Assoc.
Slovakia: Spolocnost' Downovho syndrómu na Slovensku
Slovenia: Sekcija za Downov Sindrom
South Africa: Down Syndrome South Africa
Spain:
     Down 21: Fundación Síndrome de Down
     Fundación Asindown (Valencia)
     Asociacion Sindrome de Down "Lejeune"
     Fundacio Catalana Sindrome de Down
     La Fundación Síndrome de Down de Cantabria
Sweden:
     Downs Syndrom Sverige
     Downs Syndrom - inte bara en extra kromosom
Switzerland:
     EDSA Schweiz
     Insieme - Vereinigung für Kinder mit Down-Syndrom
     Association Romande Trisomie 21
Turkey: Down sendromu Dayanisma Grubu
United Kingdom:
     UK Resources for Down Syndrome
     The UPs of Downs
     UK Down's Syndrome Assoc.
     UK Mosaic Down Syndrome Assoc.
     DS Assoc of Bristol
     Greater Manchester Branch of the DS Assoc.
     Down Syndrome Liverpool
     North East & Cumbria Branch
     Down's Syndrome Assoc. London Branch
     Oxfordshire Group of the DS Assoc.
     Scottish Down's Syndrome Assoc.
     Kingston Special Needs Project
     Inter Care Residential
Uruguay: La Asociacion Down del Uruguay

Other International, non-internet resources indexed at:
     http://www.nas.com/downsyn/org.html

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
Online Mendelian Inheritance in Man (OMIM) Page on DS (a medical description)

General Health Guidelines
Health Care Guidelines for People with DS
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
Risk and Recurrence of Down Syndrome by Dr. Paul Benke
What is Mosaic Down Syndrome? by Carol Strom
Animations of Meiosis and Fertilization

Specific Medical Topics in DS
Alzheimer's in DS by Dr. Ira Lott
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
Down Syndrome & Autistic-Spectrum Disorder (opens pdf file)
Down's Syndrome Vision Research Group (Cardiff Univ., UK)
Down's Heart Group
Growth Charts for Children with Down Syndrome
Hip Instability in Down Syndrome by Kim Voss
Menstrual Management in Down Syndrome
"Talk to Me": A personal development manual for women and girls with DS and their parents
My Brother and Me: about Down Syndrome and Alzheimer's

OTHER MISC. RESOURCES FOR PARENTS

**Stanford's Center for Research and Treatment of DS**
African-American with DS
Austism and Down Syndrome: Dual Diagnosis>
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
Creative Exchange Music Therapy
Diagnosis: Down Syndrome (a collection of stories for new parents of children with DS)
Down Syndrome - For New Parents (by The Paul Family)
Down Syndrome for Family and Friends
Down Syndrome: A Parent's Perspecitve by Australian author Fiona Place>
Have Ya Heard? The Ability of Downs
How to Write a Letter of Intent or Life Plan
Love and Learn Tapes for Teaching Reading
"Me, Hailey", a website by author Sheri Plucker on being a parent of a child with DS>
MetLife's "Division of Estate Planning for Special Kids"
Music Therapy 
OT Exchange: a site for pediatric Occupational Therapists and parents who utilize OTs
Parents' Resource - For new parents (by the Edwards Family)
Tennis Academy for People with Down Syndrome 
The Upside of Down Syndrome Company
Trisomy 21 Online Siblings Community
Welcome to Holland, by Emily P. Kingsley
Welcoming New Babies, by Pam Wilson

NON-PROFIT FOUNDATIONS

Annie Forts' Up Syndrome Fund, Inc.
Down Syndrome Research and Treatment Foundation
     (includes the Adopt a Mouse for DS program)
Down Syndrome Advocacy Foundation
Down Syndrome Research Online Advocacy Group
Foundation 21 (Australia)
The Karen Gaffney Foundation
The Lindsey Rae Foundation
Personal Ponies for Children with Disabilities
The Possible Dream Foundation
Trisomy 21 Foundation of Northern New York

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
Bernadette Resha: Artist, Musician, Model, Magician

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)
Sign Language Rebus Books for Children with Special Needs
Signing Time! ASL videos for children
TLC Kids Company: educational materials for children with disabilties
Special Fit Online: Clothes for adults with DS
C-wide: Dolphin Trips

Photographers of Children with Special Needs
Special Kids Photography
Treasured Image Photography, Phoenix

Homages, Memorials and Recollections
Mountain View Elementary School's DS Site

FAMILY AND INDIVIDUAL PAGES

A Great Day (Matthew Hickman's Site)
Abell Family Home Page
Adam Larson's Site
Aleman Family Home Page
Alexandra Rose's Home Page
Alexandria Paulina's Home Page
Anderson Darley's Memorial Page
Archie's Room
Benjamin's Wonderful Life
Brant's Family Website
Bryan D's Page
Bryce Birmingham's Page
Carmen Christi's Page
Carson Taylor Proo
Chambers Family Site
Chloe Ann's Site
Craig England's Site
Daiki's Page
Daniel Haes' Page
Danny W's Blog
Darbi's Place
Dave Moran's Page
Derek Romano's Page
Dwight Family Home Page
Elias Walendzik's Page
Elijah M's Page
Elizabeth K's website
Elizabeth McPhail's website
Emma Jayne's Page: "Wonderbabe!"
Emma Sage's Page
Fabio's Page
Gabriel's Site
Hannes Nel's Home Page
The Harper Family Page
Hayley R's Home Page
Hope Chia's Website
Hughes Family Home Page
Jackson and Friends
JD's DS Page
Jewell Family Home Page
Joe Mike's Page
Johnathan Christopher Paul's Page
Jonah Edge's Page
Jonathan Henry's Site
Jonathan Vis' Page
                          Joost's Home Page (Dutch)
Joshua Humphreys' Memorial Page
Kaitlyn and Tonya's Page
Karen H's Page
Karen S's Page
Karina's Page
Katarina's Memorial Page
Kayla's Playground
Korbinian's Page
Laura Harding's Page
Logan's Link
Lukah's Page
Luuk's Page
Macey Layne's Web Page
Makenzie Cannon's Home Page
Marijke Down to Earth! (Dutch)
Mark n Mariah's Page
Matthew Kelly's Page
Michael Regos' Page
Nicky's World
Nnamdi's Home Page
Olivia MacKenzie's Website
Paige's Home Page
Quinn B's "Mighty Quinn" page
Quinnster's Page
Rachel C's Story
Rose's Page
Roxane's Page (French)
Ryan Lee's Page
Sara Awwad's Page
Sarah Werner's Page
Shannon's Page
Sofia's Story
Stephen Phillip's Page
Summer and Merel's page
Surbey Family Home Page
Tabitha S's Home Page Tall Family Site
Tammy's Angels
Timothy Wong's Page
Tristan's Tidbits
Trost Family Home Page
Vance Family Home Page
Watership Downs Syndrome Site
Wesley's Warriors
William Robinson's Cyber Station
Woo Family Home Page
Yannick's Place
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