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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.
Top
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.
Top
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.
Top
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.
Top
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.
Top
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).
Top
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
Top
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
Top
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.
Top
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.
Top
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.
Top
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.
NHS
Direct Online Health Encyclopedia
Top
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.
Top
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
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