The National Down Syndrome Society was founded in 1979 by Elizabeth Goodwin and Arden Moulton, following the birth of Elizabeth's daughter Carson, who has Down syndrome.
The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.
The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome..
Our activities include:
Shaping and advocating for improved public policy, increased public resources and services for people with Down syndrome.
Working in partnership with our affiliates and other support organizations.
Improving educational opportunities for individuals with Down syndrome.
Advancing basic, clinical and applied research.
Implementing a national public awareness strategy.
We have over 275 affiliate groups across the country. These affiliates are local parent support groups and other organizations that work on behalf of people with Down syndrome and their families.
NDSS is one of the largest non-government supporters of Down syndrome research in the United States. Since its inception, the Society has provided millions of dollars towards advancing knowledge and research about Down syndrome, supporting the work of more than 45 scientists.
NDSS is governed by a 17-member board of directors comprised of self-advocates, affiliates, parents, professionals and community members from across the country. NDSS also benefits from the expertise of several advisory boards, including:
Affiliate Advisory Board
Clinical Advisory Board
National Advisory Board
Self-Advocate Advisory Board
Science Advisory Board
The NDSS staff is comprised of 15 full-time professionals and a three-person policy team that directs legislative advocacy efforts.
NDSS is a 501(c)(3) non-profit organization that raises funds from individuals, corporations, foundations and special events. In 2007, the annual budget was greater than $2,000,000.
