About
The National Down Syndrome Society (NDSS) works to create a world where individuals with Down syndrome thrive. Founded in 1979, NDSS combines advocacy, research, education, employment support, and policy work to enhance the quality of life for people with Down syndrome across the lifespan. The organization operates a National Policy Center in Washington, DC, and a toll-free helpline at 800-221-4602.
Mission
NDSS's stated aim is to create a world where individuals with Down syndrome thrive. The organization notes that, as of 2018, an estimated 1 in every 775 live born babies has Down syndrome, translating to approximately 5,000 babies with Down syndrome born annually in the U.S. in recent years. Medical advances have dramatically improved outcomes: as many as 80 percent of adults with Down syndrome reach age 60 today, compared with a life expectancy of age 9 in 1910.
What they do
- Advocacy and policy, including the Down Syndrome Advocacy Conference and grassroots advocacy through its National Policy Center.
- Community events such as the Buddy Walk and Family Weekend.
- Education, employment, and health and wellness programs.
- Research programs, including MinDSet Down Syndrome, a free digital learning course that trains clinical research staff to work inclusively with participants with Down syndrome.
- Scholarships and publications.
History
NDSS was established in 1979 by Betsy Goodwin and Arden Moulton, after Betsy and Barton Goodwin's daughter Carson was born with Down syndrome in 1978. In the 1980s the organization launched awareness campaigns, established the Science Scholar Award Program, and hosted the first scientific symposium on Down syndrome. The Buddy Walk was introduced in 1995 and grew from 17 walks to more than 250 nationally. NDSS spearheaded passage of the Prenatally and Postnatally Diagnosed Conditions Awareness Act in 2008 and championed the Achieving a Better Life Experience (ABLE) Act, which became law in 2014, helping people with Down syndrome maintain benefits while pursuing employment and independence. In 2023 NDSS collaborated with Mattel on the first Barbie doll with Down syndrome, and in 2025 LuMind IDSC merged into NDSS to strengthen research and advocacy efforts.
Financials
According to Form 990 data on ProPublica Nonprofit Explorer, NDSS reported total revenue of $4,702,778 and total expenses of $5,721,193 for the fiscal year ending June 2025, with total assets of $12,363,529 and net assets of $11,512,543. NDSS is a 501(c)(3) organization whose federal tax exemption was issued in August 1979.