Patricia E. Kefalas Dudek
Advocate for Elders, People
with Disabilities
and Their Families

Disabilities - Down Syndrome

Articles, Organizations, Resources

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Down syndrome (DS), 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.
Articles

A Very Special Wedding (Time.com - July 2006)
Meet Carrie and Sug, two very special newlyweds who prove that "Love can't be stopped by cultural differences or different faiths. Love can't be stopped by Down syndrome."

Medicaid Waivers (2/8/09)
A blog entry from a woman with a child with Down syndrome about Medicaid waivers to help with what insurance won't cover.

New Safety, New Concerns in Tests for Down Syndrome (Washington Post - 2/24/09)
A handful of companies are racing to market a new generation of tests for Down syndrome, a development that promises a safer way to spot the most common genetic cause of mental retardation early in pregnancy even as it weaves a thicket of moral, medical, political and regulatory concerns.

Organizations & Services

Club NDSS
A website for people with Down Syndrome and other developmental disabilities.

DownsEd International
Works to understand how developmental processes are different for people with Down syndrome and how we can best adapt support and educate to take account of these differences.

KidsHealth.org
Info on Down Syndrome - a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically.

National Down Syndrome Congress
A not-for-profit organization governed by a Board of Directors composed of parents and family members of individuals with Down syndrome, self-advocates and other individuals involved with people with Down syndrome. Its purpose is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information dissemination on all aspects of Down syndrome.

National Down Syndrome Society
Mission is to benefit people with Down Syndrome and their families through national leadership in education, research and advocacy.

Research Down Syndrome
A non-profit foundation that supports Down syndrome cognitive research, an area that in the last 5 years has experienced great advances towards developing biomedical therapies to treat the cognitive impairment of people of all ages with Down syndrome.

Resources: Websites & Blogs

Putting Faces to Down Syndrome (Chase and More)
Portrays faces of many with Down syndrome to show others the beauty, humanity, and sameness of kids with the extra chromosome.

Disability Scoop
The first nationally focused online news organization serving the developmental disability community, including Down syndrome.

Teddy's Ts
From a 25 year old with Down syndrome who designs and sells Tshirts, as well as speaking at places where people support individuals with disabilities becoming self-employed.

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