Down Syndrome

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Down Syndrome
Down Syndrome

image by: Down Syndrome Awareness

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A Generational Shift in Understanding Life With Down Syndrome


When I was six, my friend Tom died. My Mum took me aside when I got home from school and explained that he had gone into the hospital for routine surgery but something had gone wrong. She said it was just as well that he had died. You see, Tom had Down syndrome.

I don't mean to slander my mother. Like my father, she thought this was humane and rational -- that we should not cling to life if that life is one of terrible suffering. She was repeating the conventional wisdom of the day, and that wisdom said that if you had Down syndrome, your life was not worth living. Others who ought to have known better were often worse. In the eyes of many doctors, children with Down syndrome…

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Resources

 A Generational Shift in Understanding Life With Down Syndrome

The change has been dramatic.

DownSyndrome Achieves

DownSyndrome Achieves takes a fresh and proactive approach toward advocacy. Along with creating a welcoming community of support for individuals and families living with Down syndrome, we're aggressively advancing research, legislation and education.

Ten Questions You Always Wanted to Ask a Person with Down Syndrome

"I would give anything to have a child—even if it had Down syndrome. But I would have to decide that together with my wife, of course."

World Down Syndrome Day

21 March 2013 marks the 8th anniversary of World Down Syndrome Day, a global awareness day which has been officially observed by the United Nations since 2012. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder. But there is still so much more we can do.

Canadian Down Syndrome Society

To empower Canadians with Down syndrome and their families. We raise awareness and provide information on Down syndrome through the prenatal, early childhood, school years, adulthood, and retirement stages of life.

Down Syndrome Advocacy Foundation

We are a not-for-profit organization founded by a group of individuals who have children or family members with Down syndrome. We believe that individuals with Down syndrome have the right to be respected as valued members of society with their own level of independence, self determination, and sense of belonging in the community.

Down Syndrome Affiliates in Action

Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. After consecutive years of explosive growth, the conference has extended its reach internationally and is now a 501c3 nonprofit trade association.

Down Syndrome Education

We work to improve early intervention and education for children with Down syndrome around the world.

Down Syndrome Education International

We are an international charity that supports scientific research and delivers evidence-based advice and information to improve outcomes for children with Down syndrome worldwide.

Down Syndrome Family Connection

We began with a small group of parents meeting occasionally and talking about how to reach other parents of children with Down syndrome. These meetings turned into much more, growing to parent and self-advocate outings, community-wide advocacy and education events, and involvement with local businesses and other organizations. Today, DSFC is a non-profit organization providing information and support to Bloomington and surrounding areas in south-central Indiana.

Down Syndrome Information Alliance

The Down Syndrome Information Alliance provides support and resources to empower individuals with Down syndrome, their families, and our community.

Down Syndrome International

We invite you to join our community of people with Down syndrome, parents, family, friends, carers, professionals, practitioners, researchers and organisations, dedicated to improving quality of life for people with Down syndrome worldwide.

Down Syndrome Pregnancy

Congratulations on your pregnancy, and welcome to our community. If you have just received a confirmed or suspected diagnosis, you may be feeling very afraid, alone, and overwhelmed. We offer information that can help.

Down Syndrome Resource Foundation

The mission of the Down Syndrome Resource Foundation is to empower individuals with Down syndrome to reach their full potential throughout life by pioneering and providing educational programs and services, disseminating information, and changing attitudes.

Down Syndrome: Health Issues

Author's note: I'm a pediatrician and the father of Avi, 19 years old, and Nathan, 21 years old. Avi has Down Syndrome and has inspired me to write these essays about children with DS for other parents. I have put them here for general reading. You may E-mail me with any questions about these essays. I have also included some other pediatric items of interest for parents.

Down's Heart Group

We provide non-medical people in the UK with good quality information about the heart conditions associated with Down’s Syndrome and other related topics. All our information publications have been written by Down's Heart Group from a parent's perspective and as well as being evidence based, ALL items of a medical nature have been checked for accuracy by professionals in the appropriate medical field.

Down's Syndrome Association

We are often the first point of contact for many new parents of a baby with Down's syndrome looking for information and advice, and remain a valued source of support to families as their child growns and develops.

Families Exploring Down Syndrome

Millions of people around the world are affected by Down syndrome everyday. Whether it's in your home, your school, or just a chance meeting with someone who looks and talks a little different from you, we're all affected in some way. Families Exploring Down Syndrome wants you to see how people with Down syndrome and their families "shine on" and how we can all help make this a better world, not only for them, but for everyone.

Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical care, Education and Advocacy.

National Down Syndrome Congress

Founded in 1973, the National Down Syndrome Congress is the country’s oldest national organization for people with Down syndrome, their families, and the professionals who work with them. We provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome, and work to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.

National Down Syndrome Society

NDSS is committed to being the national leader in enhancing the quality of life, and realizing the potential of all people with Down syndrome.

Band of Angels

Established in 1994, Band of Angels provides support for individuals with Down syndrome and their families. Through a commitment to establish greater understand and acceptance, Band of Angels has been the voice of hope, inspiration and independence for persons with Down syndrome. Band of Angels is the world's largest provider of non-medical information on Down syndrome.

Dads Appreciating Down Syndrome

Dads Appreciating Down Syndrome, or D.A.D.S., is a committee or community group (within a local Down syndrome support organization) of fathers of children who happen to have Down syndrome. We hesitate to call our self a “support group”, even though we do, in many ways, support each other.

Down Syndrome Australia

Down Syndrome Australia is made up of State and Territory associations providing support, information and resources to people with Down syndrome and their families across the country.

EmmaSage

Emma ~ One who Heals Sage ~ One with Great Wisdom Emma Sage is our little girl that is blessed with a little extra ~~ chromosome that is ~~ on her 21st pair.

Got Down Syndrome

The blog of a girl who has a brother with Down syndrome.

LuMind IDSC Foundation

We accelerate research to improve health and independence for all with Down Syndrome and empower families with education, connections and support.

New Zealand Down Syndrome Association

To promote the participation of people with Down syndrome in their community.

Pujols Family Foundation

The Pujols Family Foundation is a national not-for-profit agency that exists to honor God and strengthen families through our works, deeds and examples. Since beginning this foundation in 2005, we have sought to help those living with Down syndrome here at home and to improve the lives of the impoverished in the Dominican Republic.

CDC

Down syndrome is a condition in which a baby is born with an extra chromosome. Chromosomes are small “packages” of genes in the body. They determine how a baby’s body forms during pregnancy and how, as the baby grows in the womb and after birth, the baby’s body functions.

KidsHealth

Down syndrome, also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. It affects about 1 in every 800 babies born in the United States.

March of Dimes

Information, fact sheet and resources on Down Syndrome.

MayoClinic

Indepth information regarding down syndrome, cause, research and resources.

MedlinePlus

Infomation, resources and links to infomation regarding down syndrome.

National Human Genome Research Institute

Learning about Down syndrome.

National Istitute of Child Health & Human Development

Understanding Down syndrome and other Intellectual and Developmental Disabilities is part of the reason the NICHD was established. Today, the Institute continues to lead research on the causes, progression, treatment, and management of Down syndrome, as well as on conditions and diseases that are associated with the syndrome.

ScienceDaily

The latest Down syndrome news and information.

The Arc

We are the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. We encompass all ages and all spectrums from autism, Down syndrome, Fragile X and various other developmental disabilities.

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